Skip to main content
All Posts By

VIPOC

After the Haute Couture show in DRC , the fight against vitiligo is on its way.

After the Haute Couture show on June 29, a new era will begin for the Franco-Congolese Association of Vitiligo and its president, Huguette Kalenga Fabiola.

Indeed, on June 29, 2023, an air of independence and liberation swept through the Congo River Hotel during the Haute Couture parade of vitiliginous people. The event was organized by the Franco-Congolese Association of Vitiligo (FCAV) with generous support from partners like the Vodacom Foundation and the Cédric Bakambu Foundation, among others.

The event occurred the day before, just a few hours prior to the celebration of the 63rd anniversary of the independence of the Democratic Republic of Congo. While the DRC was commemorating its independence, the people with vitiligo and the guests experienced this independence in a different, unique way.

In response to the organizers’ invitation, many guests were not familiar with vitiligo. They had questions about what it is, how it is contracted, and whether it’s contagious. Some of them were unaware that the renowned musician Michael Jackson had vitiligo and chose to lighten his skin to conceal the vitiligo spots. All these questions were answered during the vibrant event, and people were able to dispel their ignorance about vitiligo, gaining newfound understanding.

The night event featured a brief showcase of various treatment techniques that are already available. Participants had the opportunity to attend a presentation on ultraviolet ray treatment, which proved beneficial for them. Thanks to medical advancements, vitiligo can now be treated. The evening focused on the efforts led by AFCV, under the leadership of Huguette Kalenga Fabiola, on the banks of the beautiful and majestic Congo River.

“The primary goal is to have this condition officially recognized by the Ministry of Health and the Ministry of People Living with Disabilities and Vulnerable People. Additionally, we are currently campaigning to obtain authorization for the use of vitiligo treatment products that have already been approved in other places,” said Huguette Kalenga Fabiola.

On the evening of June 29, 2023, something extraordinary happened – a moment of liberation from prejudice. It was evident that when someone has vitiligo, the perceptions of those around them undergo a transformation. Unfortunately, individuals with this condition often become targets of curses and face various forms of discrimination and stigma. One such person who experienced this firsthand was Huguette Kalenga Fabiola. However, she is not alone in this struggle. Freddy Banza also went through similar experiences.

Freddy’s journey with vitiligo began at the doctor’s office when the first spots appeared on his lips, later spreading across his body. Despite facing this challenge, he managed to raise a family of three children. Unfortunately, his children faced mockery at school due to their father’s illness. Nevertheless, this situation opened up an opportunity for Freddy to talk to his children about vitiligo, helping them understand the disease better and encouraging them not to feel ashamed of accepting him as their father.

Before taking to the stage in front of the carefully chosen audience, Freddy Banza, who has vitiligo, shared his personal journey of contracting the condition over 15 years ago and the subsequent stigmatization he endured. He spoke about his extensive search for a cure that spanned the globe and how he eventually found solace in the Franco-Congolese Vitiligo Association, which eventually led to his participation in the fashion show on June 29, 2023. Following this remarkable haute couture event, Dr. Freddy Banza underwent a profound transformation.

“After stepping onto the runway, after being a part of this parade, I have left all the stigma behind me, and I now look toward the future with a positive outlook. It’s essential to change how others see us and embrace the uniqueness of our skin.”

Indeed, the future represents a continuation of the fight against vitiligo. The Haute Couture fashion show served as a platform for vitiliginous men and women to step out of the shadows and gain visibility. However, this is just the beginning, and they cannot rest on this achievement. Instead, they must act swiftly and energetically because the challenges ahead are immense.

Rolling up their sleeves is essential, as it signifies a commitment to actively engage in efforts to raise awareness, combat stigma, and seek further advancements in research and treatment for vitiligo. By working together and remaining determined, those affected by vitiligo can continue making strides in their journey towards acceptance, understanding, and ultimately, a more inclusive and compassionate society.

source:

World Vitiligo Day 2023 Brussels: European advocacy for Vitiligo!

For the first time, we gathered 13 representatives from European vitiligo organizations in Brussels, the capital of Europe. This gathering was our way of participating in World Vitiligo Day, which is held every year on the 25th of June. Gaone Matewa, our VIPOC President from South Africa, joined us online during these three days, and Steve, a VIPOC board member from the USA, also joined online to celebrate WVD 2023 with Pr Amit Pandia from the Global Vitiligo Foundation.

Our main objective was to gather information, data, and advocacy items from our European members to see what could be done at the European level. We aimed to provide information to European stakeholders to make them aware of the needs of people living with vitiligo and, at the same time, include vitiligo in EU research funding.

This meeting offered us a fantastic opportunity to build stronger advocacy and recognition for vitiligo patients by the Members of the European Parliament (MEP) and other European stakeholders such as The Parliament Magazine, European Patients Forum, and Mental Health Europe (MHE).

Vitiligo is a real disease.

There is no doubt among our participants that vitiligo is a real disease. However, in Sweden, vitiligo is still not considered a disease, but only a cosmetic disorder or condition, similar to Germany two years ago. This classification implies fewer chances of receiving treatment.

Challenges faced by people living with vitiligo:

– Discrimination
– Enormous impact on mental health
– Low self-esteem, anxiety, depression. A recent study shows that around 25% of vitiligo patients have suffered from suicidal ideation.
– More visibility issues for people with dark skin, and in some cultures, difficulty in getting married due to societal beliefs.
– Avoidance of outdoor activities and certain sports (such as swimming)
– Impact on sexuality
– Anxiety and concerns among affected siblings and parents, sometimes even more than the patient themselves
– Fear of having children with vitiligo, leading to reluctance to start a family
– Harassment and bullying faced by children and youth
– Use of makeup to conceal vitiligo

Prevalence of the disease:

A recent study called “All Colors, All Skins, All Dermatoses,” conducted by Pr Julien Senechal in collaboration with Pierre Fabre Laboratories, surveyed 5,000 people worldwide over three years. This project aims to provide a snapshot of the prevalence of skin diseases and their consequences. However, no study has simultaneously evaluated the worldwide prevalence of vitiligo.

New treatment, new medicine – OPZELURA

Current situation in different countries:

– Increasing advertising for “miracle” products to treat vitiligo on the internet
– Limited information about Opzelura, and some incorrect information about its side effects, causing anxiety among people
– Some doctors have advised their patients not to use Opzelura, emphasizing the need for accurate information about the medicine
– Inequality in access to the new treatment. Germany already has access, while other countries will have to wait longer
– Uncertainty about the price or reimbursement of the treatment, which is the responsibility of national health authorities in agreement with politicians, regulators, healthcare professionals, and patient representatives

Phototherapy:

Following Pr Bekkenk’s presentation about the benefits and outcomes of phototherapy (narrow band UVB), we identified similar needs but different situations depending on the country:

– Treatment-related constraints: transportation and time for all of us
– Varied situations regarding reimbursement
– Difficulty finding clinics with the right equipment in Macedonia and Serbia, poor equipment in Sweden, and a decline in phototherapy devices in France
– Home phototherapy could be a better option if the cost is not too high

Sun protection:The need for sun protection is very high, but none of these products are reimbursed.

The Doctors

Additionally, doctors do not always have a holistic view of the disease and fail to investigate comorbidities often associated with vitiligo, such as alopecia, thyroid dysfunction, and diabetes. Some doctors do not adequately address the psychological impact or burden of vitiligo and fail to provide sufficient information about the disease and its treatments.

Collaboration with pharma industries/laboratories and researchers:

Our participants expressed the need for better relations with pharmaceutical industries at the national level. They also emphasized the need to improve scientific knowledge, remain independent from the pharma industries, and avoid conflicts of interest. More attention towards patients from pharma industries (patient centricity) and increased involvement in clinical trials and scientific studies were recommended. Research budgets are increasing, and there is a need for more research at the EU level.

Data and registries:

– Lack of a registry in Macedonia, resulting in unknown prevalence. The same situation exists in Sweden.
– Necessity to have data involving family members as well
– Netherlands is developing an app for this purpose
– Need for data at the European level, requiring more information from other European countries

Recommendations (Guidelines) – Pr Nanja Van Geel:

The Vitiligo Task Force is currently updating the “Recommendations for the Management of Vitiligo,” which will be published soon. The participation of patients in the writing of these new recommendations was particularly important.

 

WORKSHOP Vital focus group:

After Pr Nanja Van Geel’s presentation, we participated in a workshop on repigmentation. We discussed what, when, and how patients perceive their repigmentation (time, effects, which part of the body, etc.). Our answers will be reported for the Vital study (Vitiligo International Task force for an Agreed List of core data), which aims to establish a Core Domain Set of items to be reported in every vitiligo-related clinical trial, thus ensuring more uniformity in the collected data.

Areas of improvement and focus for collaboration:

– Advocacy for home therapy
– Collecting studies
– Strengthening relations with pharma industries
– Monthly Zoom meetings
– Developing books and comics for kids and youths
– Establishing connections with researchers, committees, psychologists, and sociologists
– Health professional education, including training for patients
– Collaboration with makeup professionals
– Creating social media groups and engaging with the media

Focus areas for advocacy, MEP, and other European health authorities:

– Recognition of vitiligo as a real disease
– Addressing the psychological impact and mental health issues
– Implementation of European projects
– Raising awareness in Europe
– Focus on kids and youth
– Promoting equality in access to medicine and democratic health policies

Interviews with representatives of European agencies, media, and Members of the European Parliament (MEP):

We conducted interviews with representatives from Mental Health Europe (MHE) and the European Patients Forum (EPF). These interviews were highly convincing, and our collaboration was strongly encouraged, particularly in the context of the Commission’s strategic plan for Mental Health. The EPF expressed interest in the participation of vitiligo patients in their “Patients” panels, which will be valuable for advocacy and awareness-raising at the European and national levels.

We also had an interview with The Parliament, a magazine primarily targeting professionals and political decision-makers, including Members of Parliament (MEPs). The interviewee showed interest in publishing an article on vitiligo and the challenges faced by patients, considering the new policies related to the pharma industry, equal access to medicines, and the Mental Health program.

During our visit to the European Parliament, we met with MEPs who expressed great interest in our pleas and information about the disease and its psychological impact. They were empathetic and understanding, and recommended leads towards working groups (Patients Forum) or European funds (HaDEA – European Health and Digital Executive Agency).

AND ALREADY, A BIG STEP!

A significant achievement from our intervention was securing a written question on “equal access to medicines dedicated to vitiligo in all EU member countries.” The question will be addressed by MEP Elisebeta de Blasis (Italy) to the members of the Commission, representing the 27 EU countries. This intervention at the European level is a major step towards recognition of vitiligo patients and will also impact the national level.

We extend our thanks to our speakers and organizations involved in the event, including EUPATI (European Patients Academy on Therapeutic Innovation), All Colors, All Skins, All Dermatoses project, Pierre Fabre Laboratories, and various experts who shared their knowledge and insights.

About our organizations

Our organizations play a crucial role in publishing updated information, providing advice and support to people affected by vitiligo, implementing projects, assisting other countries in creating patient organizations, advocating for awareness at national and European levels, organizing communication campaigns, maintaining close connections with doctors, researchers, and dermatological academies, participating in congresses and conferences, and seeking funding. Membership growth and engagement are ongoing challenges, and we aim to involve more new and young volunteers.

We express our gratitude to our sponsors for making the 1st World Vitiligo Day Brussels 2023 a reality. This event served as the first advocacy days for vitiligo patients and their families in Europe.”

Prevalence of Vitiligo Among Adults in the United States

Question  What is the current point prevalence of vitiligo among adults in the US?

Findings  This cross-sectional, population-based online survey study of more than 40 000 adults in the US was conducted between December 2019 and March 2020. Participant self-report, and adjudication of vitiligo by 3 dermatologists through participant submission of photographs of their skin lesions, resulted in an estimated point prevalence for diagnosed and undiagnosed vitiligo combined of 1.38% (self-reported) and 0.76% (clinician adjudicated).

Meaning  This study provides current US population-based point prevalence estimates of all vitiligo, beyond just the diagnosed population, including estimates for undiagnosed, segmental, and nonsegmental vitiligo.

Abstract

Importance  Vitiligo can have profound effects on patients and is often associated with other autoimmune comorbid conditions. It is important to understand the current prevalence of vitiligo, including diagnosed, undiagnosed, and subtypes (nonsegmental and segmental).

Objective  To estimate the point prevalence of vitiligo in the US.

Design, Setting, and Participants  For this population-based study of adults in the US, a cross-sectional online survey was administered between December 2019 and March 2020 to obtain participant self-reported vitiligo status. A representative sample of the US adult general population, aged 18 to 85 years, was recruited using a stratified proportional, sampling design from general population research panels. Additionally, 3 expert dermatologists adjudicated participants’ self-reported vitiligo diagnosis by reviewing photographs uploaded by the participants using a teledermatology app designed and tested specifically for this study.

Main Outcomes and Measures  The main outcomes were the point prevalence estimates of overall vitiligo, as well as diagnosed, undiagnosed, nonsegmental, and segmental vitiligo.

Results  Among the 40 888 eligible adult participants, the mean (SD) age was 44.9 (17.4) years, 23 170 (56.7%) were female, 30 428 (74.4%) were White, and 4225 (10.3%) were of Hispanic, Latino, or Spanish origin. Self-reported vitiligo prevalence was 1.38% (95% CI, 1.26%-1.49%), with 0.77% (95% CI, 0.68%-0.85%) for diagnosed and 0.61% (95% CI, 0.54%-0.69%) for undiagnosed. Based on expert dermatologist review of 113 photographs of participants with self-reported vitiligo, clinician-adjudicated vitiligo prevalence (sensitivity bounds) was 0.76% (0.76%-1.11%), with 0.46% (0.46%-0.61%) for diagnosed and 0.29% (0.29%-0.50%) for undiagnosed. Self-reported nonsegmental vitiligo prevalence was 0.77% (95% CI, 0.68%-0.85%), with 0.48% (95% CI, 0.41%-0.55%) for diagnosed and 0.29% (95% CI, 0.23%-0.34%) for undiagnosed. Clinician-adjudicated nonsegmental vitiligo prevalence (sensitivity bounds) was 0.58% (0.57%-0.84%), with 0.37% (0.37%-0.49%) for diagnosed and 0.21% (0.20%-0.36%) for undiagnosed. Self-reported segmental vitiligo prevalence was 0.61% (95% CI, 0.53%-0.69%), with 0.28% (95% CI, 0.23%-0.33%) for diagnosed and 0.33% (95% CI, 0.27%-0.38%) for undiagnosed. Clinician-adjudicated segmental vitiligo prevalence (sensitivity bounds) was 0.18% (0.18%-0.27%), with 0.09% (0.09%-0.12%) for diagnosed and 0.08% (0.08%-0.15%) for undiagnosed.

Conclusions and Relevance  Results of this survey study demonstrated that the current US population-based prevalence estimate of overall (diagnosed and undiagnosed combined) vitiligo in adults is between 0.76% (1.9 million cases in 2020) and 1.11% (2.8 million cases in 2020). Additionally, this study suggests that approximately 40% of adult vitiligo in the US may be undiagnosed. Future studies should be performed to confirm these findings.

Introduction

Vitiligo is an autoimmune disorder in which the immune system causes patchy loss of skin pigmentation.1 Two forms of the disease, segmental and nonsegmental vitiligo, are well recognized. Segmental vitiligo, characterized by unilateral, localized distribution of vitiligo lesions, more often has rapid onset and stabilization with early hair follicle involvement. Nonsegmental vitiligo, characterized by bilateral distribution of vitiligo lesions on the body, more frequently has progressive onset with multiple flare-ups, later hair follicle involvement, and an unpredictable course.2,3 Segmental vitiligo is a less common form of the disease occurring in 5% to 16% of patients with vitiligo while nonsegmental vitiligo is the more common form.2 The average age of onset follows a bimodal pattern of early onset at 7.3 years and late onset at 40.5 years.4 However, segmental vitiligo tends to occur more commonly than nonsegmental vitiligo in younger children.2

Worldwide prevalence estimates of vitiligo vary widely with prevalence estimates ranging from 0.004% to 2.28%.5,6 In the United States, there is a paucity of population-based studies; however, based on the few studies that have been conducted in specific subpopulations, the prevalence estimates vary from 0.05% to 1.55%. Furthermore, these estimates are either outdated, do not include patients with undiagnosed vitiligo, or are sampled from specific subgroups of the general population.712

Vitiligo can have profound effects on a patient’s well-being and is often associated with other autoimmune comorbid conditions. Furthermore, because the disease course, prognosis, and treatment modalities are different between segmental and nonsegmental vitiligo, it is important to distinguish between these vitiligo forms at diagnosis.13 Therefore, it is important to gain a better understanding of the current prevalence of vitiligo among adults, particularly the prevalence of nonsegmental vitiligo compared with segmental vitiligo, along with the prevalence of diagnosed and undiagnosed vitiligo. This information can help inform timely diagnosis and clinical management with new and emerging therapies, inform patient access to health care, improve patient education efforts, and inform efforts to increase disease awareness. The objectives of this large, general population survey study were to estimate the point prevalence of vitiligo in the US, including diagnosed and undiagnosed vitiligo, as well as segmental and nonsegmental vitiligo, and to describe the demographic and clinical characteristics of this patient population.

Methods
Study Design

A cross-sectional population-based survey was conducted between December 30, 2019, and March 11, 2020. Participants who reported being diagnosed with vitiligo by a clinician (self-reported diagnosed) or reported having vitiligo by screening positive for undiagnosed vitiligo in the survey (self-reported undiagnosed) were invited to submit photographs for clinician evaluation using a teledermatology mobile health application (teledermatology app) designed and tested specifically for this study. Clinician evaluation of the photographs was conducted by vitiligo experts between February 21 and March 30, 2020. This study was approved by the New England Institutional Review Board, and participants provided online consent.

Study Population

A representative sample of the US adult general population, 18 to 85 years of age, was recruited by email invitation using a stratified proportional, sampling design from a proprietary US general population research panel provided by Schlesinger Group. Stratified quotas were set to be representative of the 2017 US Census estimates with respect to age (4-85 years), gender, race, household income level, and geographic region.14,15 To be eligible for the general population research panel, participants must have had an email address and valid photograph identification, provided key demographic information, and validated email through a confirmation email link.

Based on response rates within the various census quotas, subsequent invitations were sent by email to randomly selected participants to achieve a census-balanced sample of the targeted 50 000 participants. The survey link was provided in the email. Participant compensation ranged from $2.50 for participants who did not report having vitiligo to $60 for participants who reported having vitiligo and uploaded photographs. Information for the pediatric population (4-17 years of age) was obtained through parent and/or legal guardian proxy in accordance with the Federal Trade Commission’s Children’s Online Privacy Protection Act. The results among adults in the US are reported herein. The results of the pediatric population will be published elsewhere.

Participant Survey

The participant survey included demographics, clinical characteristics, comorbidities, and vitiligo screening questions for all participants. Vitiligo screening questions were adapted from published screening tools, the patient-administered Vitiligo Screening Tool,16 and a self-reported questionnaire. The screening questions included an atlas of photographs developed by Phan et al17 and by expert clinicians in the field to enable identification of participants with diagnosed or undiagnosed vitiligo. A representation of the consecutive screening questions and vitiligo images that participants saw in the online survey are shown in the eAppendix in the Supplement.

Both self-reported diagnosed participants and self-reported undiagnosed participants (Figure) were asked to complete additional questions on the laterality (bilateral or unilateral) of their lesions and vitiligo characteristics (eg, age of onset and extent of body surface area [BSA] involvement). The Self Assessment Vitiligo Extent Score was used to determine BSA involvement for participants reporting bilateral vitiligo (proxy for nonsegmental vitiligo),18 and hand or index finger units were used to measure the extent of BSA involvement for participants reporting unilateral vitiligo (proxy for segmental vitiligo).19,20

Participants with self-reported diagnosed or undiagnosed vitiligo were invited to upload photographs of their lesions for clinician evaluation. Participants who consented to upload photographs were asked to download the study’s teledermatology app to their personal device (eg, smartphone). Participants were provided instructions in the app, including logging in with a unique, deidentified code; granting access to the mobile device camera; selecting a body part location for each photograph; and submitting up to 3 photographs. The teledermatology app was designed with facial recognition and blur detection to ensure clear and anonymized images by prompting participants to retake photographs when needed.

Clinician Adjudication

Three board-certified dermatologists with expertise in vitiligo (including K.E. and A.G.P.) served as adjudicators and evaluated the uploaded photographs from participants who self-reported having diagnosed or undiagnosed vitiligo. The clinicians were provided with participants’ self-reported information on age, gender, race, age of vitiligo onset, laterality, Fitzpatrick skin type (FST), and other skin conditions to assist with their evaluation. They were blinded to the participant’s report of being diagnosed or undiagnosed and independently classified each participant into 1 of 6 classifications: (1) definitely has vitiligo, (2) probably has vitiligo, (3) definitely does not have vitiligo, (4) probably does not have vitiligo, (5) unable to determine due to poor quality photographs, or (6) unable to determine due to any other reason (eg, need more photographs, need more clinical history). The 6 classifications were subsequently collapsed into 3 categories for analysis: (1) vitiligo (included classifications 1 and 2), (2) nonvitiligo (included classifications 3 and 4), and (3) indeterminate (included classifications 5 and 6).

Final vitiligo adjudication was made by clinician majority, defined by at least 2 of the 3 clinicians agreeing on the categorization of vitiligo, nonvitiligo, or indeterminate. If there was no majority, the case was categorized as indeterminate. Clinicians further evaluated the self-reported laterality (ie, lesions on 1 or both sides of the body) of the vitiligo lesions and provided their own assessment of nonsegmental vitiligo or segmental vitiligo based on photographs and following the consensus classification from the 2011 Vitiligo European Taskforce consensus conference for segmental vitiligo.21 Agreement between the clinicians was assessed using the Fleiss (unweighted) κ coefficient.2224

Statistical Analysis

All analyses were performed using SAS software, version 9.4 (SAS Institute). Descriptive statistics were calculated for participant demographic and clinical characteristics and reported overall and for the participants with self-reported diagnosed and self-reported undiagnosed vitiligo. Comparisons between the participants with self-reported diagnosed and self-reported undiagnosed vitiligo were assessed using t test for continuous variables and χ2 test for categorical variables. The level of significance was 2-sided P = .05 and is presented for descriptive purposes. The sample size for this study was chosen to provide reasonable precision around the estimate of prevalence and not to examine differences in these characteristics between the diagnosed and undiagnosed vitiligo participants.

Self-reported point prevalence estimates of vitiligo were calculated as the percentage of participants who self-reported vitiligo. Clinician-adjudicated point prevalence estimates of vitiligo were calculated as the prevalence of self-reported vitiligo weighted by the proportion of participants with self-reported vitiligo that was in agreement with the clinician adjudication. Indeterminate cases were not included in either the numerator nor denominator for the clinician-adjudicated prevalence (base case scenario). Two sensitivity analyses were conducted in which indeterminate diagnoses were recategorized as: (1) vitiligo diagnoses (upper-bound scenario) and (2) nonvitiligo diagnoses (lower-bound scenario).

Additionally, self-reported and clinician-adjudicated point prevalence estimates were calculated separately for participants reporting bilateral (nonsegmental proxy) and unilateral (segmental proxy) vitiligo lesions. To improve the representativeness of the estimates, all point prevalence estimates were weighted using raked weights to adjust the census-based sample to 2020 US Census estimates and mitigate differential representation across key subgroups (eg, age groups, gender, race) by using an iterative proportional fitting process.25,26

Results
Participants

A total of 322 240 individuals were invited to take part in the survey, of which 60 524 (18.8%) responded (Table 1). Approximately one-third (n = 19 636 [32.4%]) of those who responded were not eligible, with the most common reason (n = 10 630 [54.1%]) being that the US Census quota (ie, age, gender, race, geographic region, income level) was already met.

The 40 888 eligible adult participants aged 18 to 85 years were generally representative of the estimated 2017 US Census population (Table 2). The mean (SD) age was 44.9 (17.4) years, and 23 170 (56.7%) were female. The majority (n = 30 428 [74.4%]) identified themselves as White, and 4225 (10.3%) participants identified themselves of Hispanic, Latino, or Spanish origin. The greatest number of participants (n = 16 265 [39.8%]) resided in the US South geographic region.

Prior diagnosis with vitiligo by a clinician (self-reported diagnosed vitiligo) was reported by 314 adults. An additional 249 adults screened positive for vitiligo in the survey (self-reported undiagnosed vitiligo) (Table 2). Compared with participants with self-reported undiagnosed vitiligo, participants with self-reported diagnosed vitiligo were older on average (42.8 vs 39.3 years; P = 0.01 [all adult participants, 44.9 years]), had a greater percentage of female (191 [60.8%] vs 135 [54.2%]; P = .12 [all adult participants, 23 170 (56.7%)]) and White participants (215 [68.5%] vs 149 [59.8%]; P = .03 [all adult participants, 30 428 (74.4%)]), and a lower percentage of participants of Hispanic, Latino, or Spanish origin (48 [15.3%] vs 53 [21.3%]; P = .07 [all adult participants, 4225 (10.3%)]) (Table 2).

The mean age at vitiligo onset was 27.6 years for participants with self-reported diagnosed vitiligo compared with 25.0 years for participants with self-reported undiagnosed vitiligo (P = 0.06; Table 2). More participants with self-reported diagnosed vitiligo reported bilateral presentation compared with participants with self-reported undiagnosed vitiligo (197 [62.7%] vs 114 [45.8%]; P < .001). Among participants with self-reported diagnosed vitiligo, more reported facial involvement compared with participants with self-reported undiagnosed vitiligo (140 [71.1%] vs 75 [65.8%]; P = .33) (Table 2). Participants with self-reported diagnosed vitiligo also reported greater mean BSA percentage compared with participants with self-reported undiagnosed vitiligo for both unilateral presentation (0.62% [95% CI, 0.45%-0.78%] vs 0.55% [0.38%-0.71%]; P = .55) and bilateral presentation (11.46% [95% CI, 9.05%-13.87%] vs 7.68% [95% CI, 5.59%-9.77%]; P = 0.04). Lastly, FST distribution was similar among participants with self-reported diagnosed and self-reported undiagnosed vitiligo, with the most common being FST III (self-reported diagnosed, 123 [39.2%] vs self-reported undiagnosed, 96 [38.6%]), followed by FST IV (self-reported diagnosed, 91 [29.0%] vs self-reported undiagnosed, 74 [29.7%]) and FST II (self-reported diagnosed, 73 [23.2%] vs self-reported undiagnosed, 60 [24.1%]) (P = .44; Table 2).

Prevalence

The self-reported point prevalence of vitiligo was 1.38% (95% CI, 1.26%-1.49%), of which 0.77% (95% CI, 0.68%-0.85%) was for nonsegmental vitiligo (self-reported as bilateral) and 0.61% (95% CI, 0.53%-0.69%) was for segmental vitiligo (self-reported as unilateral) (Table 3). Following clinician adjudication of the 113 participants who agreed to participate in the expert dermatologist review of their lesions and uploaded photographs (71 self-reported diagnosed vitiligo and 42 self-reported undiagnosed vitiligo), the base case scenario point prevalence of vitiligo was 0.76% (95% CI, 0.68%-0.84%), of which 0.58% (95% CI, 0.49%-0.66%) was for nonsegmental vitiligo and 0.18% (95% CI, 0.15%-0.21%) was for segmental vitiligo. There was moderate agreement among the 3 expert dermatologists (κ = 0.52; P < .001).

Among diagnosed vitiligo, the self-reported point prevalence was 0.77% (95% CI, 0.68%-0.85%), of which 0.48% (95% CI, 0.41%-0.55%) was for nonsegmental vitiligo (self-reported as bilateral) and 0.28% (95% CI, 0.23%-0.33%) was for segmental vitiligo (self-reported as unilateral). Following clinician adjudication, the point prevalence was 0.46% (95% CI, 0.39%-0.52%), of which 0.37% (95% CI, 0.30%-0.43%) was for nonsegmental vitiligo and 0.09% (95% CI, 0.07%-0.11%) was for segmental vitiligo (Table 3).

Lastly, among undiagnosed vitiligo, the self-reported point prevalence was 0.61% (95% CI, 0.54%-0.69%), of which 0.29% (95% CI, 0.23%-0.34%) was for nonsegmental vitiligo (self-reported as bilateral) and 0.33% (95% CI, 0.27%-0.38%) was for segmental vitiligo (self-reported as unilateral). Following clinician adjudication, the point prevalence was 0.29% (95% CI, 0.24%-0.34%), of which 0.21% (95% CI, 0.15%-0.26%) was for nonsegmental vitiligo and 0.08% (95% CI, 0.06%-0.11%) was for segmental vitiligo (Table 3).

After the sensitivity analyses, the clinician-adjudicated prevalence remained unchanged when indeterminate diagnoses were reclassified as nonvitiligo diagnoses (lower-bound scenario) and increased when indeterminate diagnoses were reclassified as vitiligo diagnoses (upper-bound scenario) to 1.11% (from 0.76%) overall, 0.61% (from 0.46%) for diagnosed vitiligo, and 0.50% (from 0.29%) for undiagnosed vitiligo (Table 3).

Discussion

In this large population-based study of more than 40 000 adults, representative of the 2017 US general population national estimates, we found that the estimated point prevalence of vitiligo was 0.76% based on clinician adjudication and 1.38% based on self-report. These results support generalizability because we performed targeted sampling of participants that represents the 2017 US population estimates by age, gender, race, region, and household income level. Additionally, the use of raking analytic methods to further weight the sample to 2020 US population estimates when determining the point prevalence supports the generalizability of the prevalence estimates.

The estimates of point prevalence of diagnosed vitiligo were 0.46% (clinician-adjudicated base case) and 0.77% (self-reported) and fell within the range of previously published estimates of diagnosed vitiligo in the US. Specifically, 1 large, general population study in the US, conducted 4 decades ago, estimated the prevalence of diagnosed vitiligo at 0.49%.6,8 Additionally, a large database study estimated the prevalence of diagnosed vitiligo at 0.50%.7 Other studies on the prevalence in the US only focused on regional US communities (eg, control patients from a case-control study of juvenile rheumatoid arthritis [prevalence estimate of 0.40%] and Arab Americans [prevalence estimate of 1.55%]).10,11 Lastly, a large administrative claims database study reported a prevalence estimate of 0.05%, which is inherently reliant on the clinician recording the diagnosis in a claim for reimbursement and, thus, is likely to underestimate the true prevalence.12

The estimates of point prevalence of undiagnosed vitiligo were 0.29% (clinician-adjudicated) and 0.61% (self-reported). These findings suggest that up to 40% of adults with vitiligo in the US may be undiagnosed. We found that among participants with undiagnosed vitiligo compared with participants with diagnosed vitiligo, there was a higher proportion who were non-White (40.2% vs 31.5%) or of Hispanic, Latino, or Spanish origin (21.3% vs 15.3%). Additionally, unilateral presentation of lesions was more common among those with self-reported undiagnosed vitiligo than among participants with diagnosed vitiligo (54.2% vs 37.3%). The estimates of unilateral presentation (ie, segmental vitiligo) among those with diagnosed vitiligo is higher than the 5% to 16% previously reported in those with vitiligo.2 To our knowledge, this is the first study to identify these trends in the undiagnosed population.

The present study also estimated the prevalence of segmental and nonsegmental vitiligo for both diagnosed and undiagnosed vitiligo. The distinction between segmental and nonsegmental vitiligo is of prime importance for both patients and physicians when reporting on the prevalence of vitiligo. Indeed, patients are usually concerned by the spreading of the disease and its unpredictable course, which is the hallmark of nonsegmental vitiligo. In fact, these vitiligo forms do not behave in the same manner, and the unpredictable nature of vitiligo is associated with negative emotions in patients.27,28 Besides, this unpredictable characteristic of nonsegmental vitiligo is of most importance in the therapeutic algorithm of vitiligo.

Limitations

While this study closely represents the distribution of the US general population with respect to demographic characteristics, there is a potential for selection bias owing to internet accessibility. However, it was estimated by the American Community Survey that the percentage of households in the US with internet access was nearly 90% in 2016.29 Additionally, because the survey data were self-reported by participants and a low percentage of participants with vitiligo uploaded photographs (20.1%), the data may be subject to reporting bias. To mitigate some reporting bias, the survey questions included nonclinical terminology next to any clinical terminology, where appropriate.

Furthermore, vitiligo status was self-reported by participants and not confirmed with in-person evaluation or diagnostic testing. However, vitiligo screening questions were developed based on adaptations of published screening tools and feedback from expert dermatologists in the field. Clinician adjudication of self-reported vitiligo was also undertaken using a teledermatology app. The use of telehealth solutions is evolving in epidemiology research, and while user error and photograph quality cannot be closely controlled, advantages include the ability to scale to a large population study, retain a large sample size owing to ease of use, and standardize data collection and submission.

Clinician adjudication was performed for only 20.1% of participants who uploaded photographs, and assumptions of missing at random cannot be confirmed. Nevertheless, the clinician-adjudicated prevalence estimates of vitiligo in this study, with the inclusion of sensitivity analyses, provide a conservative and reliable estimate of the prevalence of vitiligo in the US population with lower prevalence of clinician-adjudicated vitiligo potentially accounting for bias owing to higher self-reporting. In light of the remarkably high number of participants with undiagnosed vitiligo observed in this study, future studies could potentially explore the development and validation of teledermatology apps that allow for potential diagnosis of vitiligo and encourage undiagnosed patients to seek diagnosis and treatment.

Conclusions

This survey study provides current US population-based prevalence estimates of overall (diagnosed and undiagnosed combined) vitiligo in adults between 0.76% (1.9 million cases in 2020) and 1.11% (2.8 million cases in 2020) and estimates that approximately 40% of adults with vitiligo may be undiagnosed in the US. Importantly, it also provides prevalence estimates for segmental and nonsegmental vitiligo. The high percentage of participants with undiagnosed vitiligo coupled with different rates across racial and ethnic demographic subpopulations should be studied further.

source

Vitiligo and anxiety: A systematic review and meta-analysis

Background

Vitiligo is an acquired depigmenting skin disease that is often accompanied by mental distress. There are numerous studies dedicated to local and global prevalence of depression in patients with vitiligo but anxiety has not been recognized as a major mental problem within named population. We aimed to evaluate the prevalence of anxiety among patients with vitiligo from different countries and to compare it with patients suffering from eczema, psoriasis, and acne.

Methods

In November 2019, we conducted a systematic search for observational studies that examined the prevalence of anxiety in vitiligo patients. Fifteen studies comprising 1176 patients with vitiligo were included to our systematic review.

Results

The general prevalence of anxiety among vitiligo patients was equal to 35.8%. Statistically significant difference in anxiety rates was found among female and male patients (47.32% vs 42.4%) (P = 0.03), but the clinical relevance of this issue remains arguable. In addition, the pooled odds ratio among vitiligo and non-vitiligo patients did not indicate a statistical significance among patients coming from different continents.

Conclusions

The pooled prevalence of anxiety among vitiligo patients worldwide was comparable to other severe skin disorders. This finding accentuates the necessity of anxiety awareness in management of patients with skin diseases.

Introduction

Psychogenic effects related to various health disorders have become the issue of growing discussion in scientific literature over past decades [12]. Globally, there is an increasing rate of anxiety disorders–a group of mental health problems characterized by the feelings of worry and uneasiness that are commonly generalized and present an overreaction to a problem that appears to be threatening [3]. Anxiety disorders quite seldom occur alone and are frequently associated with depression or other mental health problems [4].

The sample of such population groups could be made of vitiligo, which is an acquired lasting skin disorder. Although the etiology of vitiligo is not fully understood yet, common manifestation includes the patches of depigmentation with typically sharp margins [5]. Although the global rate of vitiligo is approximately 1%, some populations show twofold to threefold increase in rates [6]. These patches of skin depigmentation tend to expand with time and affected individuals experience a range of emotional problems. In certain cultures individuals suffering from vitiligo may be stigmatized and could experience difficulty with finding a couple or staying employed [7]. Inevitably, this worsens psychological distress and might even lead to a suicide attempt, especially if vitiligo affects visible body parts [8].

Although the relatively many papers devoted to the issue of anxiety in vitiligo patients had been published before, there is no pooled evidence that is needed for comprehensive understanding of this problem. A 2017 systematic review and meta-analysis on the prevalence of depression among patients with vitiligo estimated that the pooled prevalence of depression was 0.253 across 25 studies [9]. A 2018 meta-analysis of the prevalence and odds of depression in patients with vitiligo found a wide range of prevalence between 8% and 33% across 17 studies, depending on the diagnostic tool used. [10]. Meanwhile, anxiety in patients with vitiligo warrants higher awareness and greater attention as it can negatively affect adherence to treatment and overall quality of life [11]. As people with vitiligo appear to experience psychological problems with higher frequency than general population, the assessment of psychological state should be performed during routine clinical evaluation [1213].

Such, the existing data indicate that patients with vitiligo possibly face a higher risk of mental distress, although the current evidence coming from pooled analyses is insufficient. In this systematic review the null hypothesis was that there is no difference in prevalence of anxiety among vitiligo and non-vitiligo persons. Therefore, the aim of this study was to evaluate the prevalence of anxiety among patients with vitiligo from different countries and to compare it with patients suffering from eczema, psoriasis, and acne by conducting a systematic review and meta-analysis of published observational studies.

The specific goals of the present systematic review and meta-analysis are:

  • To determine the prevalence of anxiety in vitiligo patients in comparison with non-vitiligo patients.
  • To investigate the impact of some variables such as gender, continent, type of skin disorder on anxiety rate among vitiligo and non-vitiligo patients.

Materials and methods

We conducted this systematic review and meta-analysis in accordance with the Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) statement [14]. Prior to quantitative and systematic synthesis we retrieved all studies that were targeted on assessment of associations between vitiligo and anxiety.

Search strategy

A comprehensive database search was performed independently by two co-authors (A.K. and L.K.) using Pubmed, PsycINFO and Cochrane Library databases. An initial literature search in the mentioned databases used such keywords as “vitiligo” and “anxiety”. The following search criteria were applied for PubMed (Ovid MEDLINE): [“Vitiligo”(MeSH)] AND [“Anxiety”(MeSH) OR “Anxiety Disorder” (MeSH) OR Anx* (title/abstract;TIAB)] (see S1 Table). This search was limited to English-language studies published from inception to 30 November 2019. Also, we looked for publications in Russian language, for which reason we applied for Cyberleninka and eLIBRARY databases to screen for studies published from inception to 30 November 2019. Unfortunately, we failed to identify such publications despite the careful search and for this reason we only included studies published in English. Subsequently, we evaluated the abstracts of all identified papers to determine if they meet the inclusion criteria. Finally, we screened the reference lists of all eligible articles in order to find additional relevant articles.

Inclusion criteria

Our inclusion criteria were as follows: (i) studies that included vitiligo patients; (ii) studies that assessed the prevalence of anxiety; (iii) studies that evaluated the prevalence of anxiety self-reporting or examination by a psychiatrist; (iv) studies that were published in English and (v) studies that were considered to be of high and medium-quality by Newcastle-Ottawa scale (≥4 points).

Exclusion criteria

Our exclusion criteria were as follows: (i) studies that did not state the rate of anxiety among vitiligo patients or provided insufficient data for calculation of anxiety rates; (ii) unavailability of the full text for full review; (iii) studies with low methodological quality, i.e. case reports, case series and commentaries; (iv) studies published in other languages apart from English and (v) studies that were considered to be of low-quality by Newcastle-Ottawa scale (<4 points). Besides, we did not include the studies that reported on anxiety during or after such psychotraumatic events as a war, natural or man-induced disaster, epidemic because they enable confounder effects.

Article selection

The initial search and selection of articles was performed independently by two co-authors (A.K and L.K.), who screened for titles and abstracts and excluded all articles that did not meet the inclusion criteria. As a next step, we retrieved the full texts of articles that were considered to be eligible and evaluated all studies on the basis of their design. Any differences of opinion on study eligibility were resolved in discussions with Y.S. The selection process following PRISMA guidelines is presented in Fig 1.

The studies had to report sufficient data, such as odds ratio (OR) and 95% confidence interval (CI), so that the corresponding standard errors (SEs) could be calculated. If such information was not available, we looked for the crude data with the number of cases.

Data extraction and study evaluation

Two reviewers (A.K. and L.K.) extracted the data from the selected articles. All selected data were arranged as a standardized form which contained:(i) last name of first author and year of publication;(ii) country of the study origin; (iii) the sample size of vitiligo and non-vitiligo groups, if available; (iv) prevalence of anxiety in vitiligo patients and in control groups, if available; (v) anxiety assessment tool; (vi) proportion of female and male patients with anxiety, if available. The quality of the included articles was assessed using the Newcastle-Ottawa scale for nonrandomized studies [15]. Studies that get ≥ 7 points on Newcastle-Ottawa scale were considered to be of high quality, 4–6 points matched the criteria of medium-quality studies and <4 points were considered to be poor-quality studies. Each article was assessed independently by two authors (A.K. and L.K.). All scoring differences were conformed through discussion with Y.S.

Statistical analysis

We carried out statistical analysis using the Review Manager software (RevMan) Version 5.3 (Copenhagen: The Nordic Cochrane Centre, The Cochrane Collaboration, 2014). Using the random-effects model, we then calculated the prevalence and event rate of anxiety in vitiligo patients and in total study populations. The I2 value to assess heterogeneity among studies was processed. We used the random-effects model when heterogeneity across the studies was large (I2 > 60%, P< 0.05) and fixed-effects meta-analysis at small heterogeneity (I2 < 60%, P< 0.05).

We evaluated the risk of publication bias by using Egger’s graphical method. Almost all studies (more than 95%) fall in symmetrical distribution that confirms minimal risks of selection bias. Thus, the funnel plot did not suggest any publication bias (see S1 Fig).

Ethics statement

All analyses were based on previously published studies; no ethical approval or patient consent was required.

Subgroup analyses

The subgroup analyses were performed to study the impact of gender, continent and skin disorder on the prevalence of anxiety among vitiligo patients. United Nations Standard Country or Area Codes for Statistical Use service was used to classify all included studies by continent [16]. We classified such countries as Saudi Arabia, United Arabian Emirates, Turkey and Georgia as countries in the Middle East. India and Bangladesh were grouped as Southern Asia countries. African region included Ethiopia, Nigeria and Egypt. Also, we differentiated Mexico as a Southern America country and Estonia as a European country. In controlled studies prevalence of anxiety was compared between vitiligo patients and non-vitiligo groups. As for the type of skin disorder, some studies contained the data on the prevalence of anxiety among patients with eczema, atopic dermatitis, psoriasis, albinism, melasma, acquired pigmentary disorders, acne, alopecia, chronic urticaria, neurodermatosis, scabies while the others contained the data on miscellaneous skin diseases. Most commonly the control group contained patients with psoriasis, acne and eczema (nine, six and four studies, respectively).

 

Results

A search using Pubmed, Cochrane Library, Research Gate, Google Scholar, Cyberleninka and eLIBRARY allowed to identify 259 studies (Fig 1). Cochrane Library does not contain studies which met the inclusion criteria. One hundred and eighteen studies were removed as duplicates.

The titles and abstracts of remaining 141 articles were screened. Of these, 105 were excluded from subsequent analysis as they did not provide enough data to calculate the effect size (102 publications) or could not be obtained in full text (3 publications). Full texts of 36 studies were reviewed, and 21 of them were excluded for the following reasons: irrelevant outcomes (n = 7); review articles (n = 7); non-English/non-Russian language (n = 4); poor-quality by Newcastle-Ottawa scale (<4 points) (n = 3). Finally, 15 articles with 1176 cases of vitiligo were included to our study and the sample size ranged from 15 to 164. All articles provided the data on the prevalence of anxiety in vitiligo patients. Anxiety was evaluated using self-report screening tools only.

The vast majority of studies (10) included participants whose age was >18 years, in two studies patients were elder than 15 years, in one study patients were elder than 16 years, one study comprised patients elder then 17 years, and in one study the age of participants was not mentioned. Six studies from Middle East, three studies from Southern Asia, four studies from Africa, one study from Southern America and one study from Europe were included. The number of female patients with vitiligo ranged from 23 to 103, in three studies the gender proportion was not stated. The tools which were used to identify the rate of anxiety were the Hospital Anxiety and Depression Scale (HADS), the fourth (DSM-IV) and the fifth (DSM-5) editions of Diagnostic and Statistical Manual of mental disorders, 28-item General Health Questionnaires, 21-item The Depression, Anxiety and Stress Scale (DASS-21), General Anxiety Disorder (GAD-7), ES-Q, Beck Depression Inventory, Illness Perception Questionnaire (IPQ) [41723].

All studies (n = 15) were designed as cross-sectional studies. Evaluating the quality of included studies with Newcastle-Ottawa scale, we found that three studies met the criteria of fair quality, twelve studies was of good quality. Study countries, geographical regions, sample size, prevalence of anxiety among vitiligo patients, screening tools, study design and quality of included publications are presented in Table 1.

Table 2 summarizes the prevalence and event rates of anxiety in total sample and in vitiligo patients. The sample size in fifteen studies varied from 42 to 618 participants. The number of vitiligo patients in included studies ranged from 23 to 164. The prevalence of anxiety in vitiligo patients fluctuated from 4.76% to 60.0%, so the minimal and maximal event rate meanings were equal to 0.05 and 0.60, respectively.

Analyses of the global rate of anxiety among vitiligo patients using random-effects models demonstrated that prevalence was equal to 35.8%. Also, we performed the subgroup analysis of anxiety rate among vitiligo patients according to their gender, type of skin disorder and continent of residence. The statistically significant difference in prevalence rates was found comparing African, European, Middle East and South Asian countries (33.29%, 27.93%, 32.02%, 13.73% respectively; P = 0.01 using χ2- statistics) (see S2 Fig). However, there was no difference in prevalence rates based on patient gender and type of skin disorder in the subgroup analyses (see S3 Fig and S4 Fig).

The pooled odds ratio (OR) of anxiety among patients with vitiligo was 1.13 [95% CI 0.75, 1.70] (Fig 2). There was moderate heterogeneity between the studies (I2 = 66%; P = 0.0004).

The prevalence of anxiety was 40.38% for acne patients vs 32.93% for vitiligo patients, and this result was not statistically significant (P = 0.22). The prevalence of anxiety in psoriasis patients was 27.34% vs vitiligo patients 28.44%. While that in eczema patients was 33.22% vs vitiligo patients 37.59%. However, these differences were not statistically significant (see S5 Fig).

There were only four studies that reported on prevalence rates of anxiety among female and male patients with vitiligo. The prevalence of anxiety in female patients compared to male patients was higher (47.32% vs 42.4%) and this difference was statistically significant (P = 0.03) (see S6 Fig).

Grouping by continent the pooled OR among vitiligo and non-vitiligo patients was as follows: 1.82 [0.75, 4.40] in Africa (P = 0.18), 0.57 [0.25, 1.33] in Europe (P = 0.19), 0.80 [0.40, 1.63] in Middle East (P = 0.54), 1.32 [0.73, 2.40] in Southern Asia (P = 0.36) (see S7 Fig).

Discussion

This meta-analysis aimed to evaluate the prevalence of anxiety among patients with vitiligo from different countries and to compare it with patients suffering from eczema, psoriasis, and acne. We expected that patients with vitiligo have a significantly higher risk of anxiety or anxiety symptoms as compared to those who present with no pigmentary skin disorders. In fact after conducted systematic review and meta-analysis the null hypothesis was reconfirmed, there was no difference in prevalence rates of anxiety among comparison groups. About one-third of vitiligo patients have the symptoms of anxiety. We found that the difference in the prevalence of anxiety between males and females was statistically significant, but of course the clinical relevance of this issue remains disputable. When comparing the prevalence of anxiety in different skin disorders including vitiligo, patients with psoriasis, eczema and acne had no the significantly higher rates of anxiety. Similarly, we did not find statistically significant difference in prevalence of anxiety between vitiligo patients coming from various continents.

Across the studies included in this meta-analysis, the prevalence of anxiety in vitiligo patients varied from 4.76% to 60.0%. Hospital Anxiety and Depression Score (HADS) was utilized in 40.0% of studies and it presents a self-assessment scale designed for detecting mental disorders in hospital settings [17]. The fourth (DSM-IV) and fifth (DSM-5) editions of Diagnostic and Statistical Manual of mental disorders were another popular method for anxiety detection in the selected articles. Other tools for anxiety measurement comprised 28-item version of General Health Questionnaires and this was used in two studies included in this meta-analysis. Also, the selected studies utilized other tools for anxiety detection, such as DASS-21, GAD-7, ES-Q, Beck Depression Scale, IPQ. The large variety of anxiety screening tools might be the possible cause of the moderate heterogeneity observed in our systematic review. Also, the wide range of anxiety assessment tools did not allow us to perform the subgroup analysis according to this criterion. Besides, due to the lack of data on prevalence of anxiety symptoms according to severity of vitiligo it was impossible to conduct the sub-analysis of anxiety rate regarding to extent of depigmentation.

Comparison of anxiety levels in vitiligo patients depending on the continent of their residence showed that there is no statistically significant difference in anxiety rate among people living in different regions. Although the highest odds ratio (1.82 [0.75, 4.40]) was found in African vitiligo patients. We suggest that this finding might be explained by various views and levels of acceptance typical for people belonging to different cultures. Due to the fact that ethnicity correlates with skin color, the presence of achromatic spots may have a greater adverse psychological effect on participants from ethnic groups with darker skin [38]. Certain cultures are characterized by a low level of vitiligo acceptance. For example, in some regions of India, vitiligo is often called “white leprosy”, which leads to an even greater aggravation of the patient’s psychological problem [7].

The difference in the prevalence of anxiety among male and female vitiligo patients was statistically significant as females had higher rate of anxiety. This fact is concordant with the global trends of anxiety epidemiology [39]. Borimnejad and co-authors found that female patients with vitiligo have lower quality of life indicators and more psychological disorders than male patients [40]. Similar results were also reported by the Tunisian study, where women with visible skin defects could not embody themselves as employee and potential bride due to stigmatization [41].

An analysis of the studies included in our meta-analysis demonstrated that anxiety is most often associated with psoriasis, eczema and acne as compared with other dermatological diagnoses. When comparing the prevalence of anxiety in patients with different skin disorders, we found that acne patients have the highest risk of anxiety development. Even though this finding was not statistically significant a higher level of anxiety seen in acne patients could be explained by hormonal imbalance (elevated quantity of androgens) as well as by the fact that acne affects adolescents and young people at a time when they are more likely to be concerned about their body and social life [42]. Also, the prevalence of anxiety in psoriasis and vitiligo patients was very similar (27.34% vs. 28.44%, respectively). When comparing eczema and vitiligo patients, the prevalence rates of anxiety were almost comparable (33.22% vs.37.59%, respectively). Slightly higher prevalence of anxiety in vitiligo patients might be explained by the fact that most of the studies included in this meta-analysis were carried out in Asian and African countries and vitiligo in patients with dark skin phototype is associated with stigmatization and reduced quality of life [43].

Melanocytes destruction and anxiety seem to be associated strongly due to similar mechanisms of neuroendocrine dysregulation. Some studies demonstrate the role of increased levels of neuromediators in vitiligo development. Elevated levels of norepinephrine were found in microenvironment of melanocytes, urine and plasma of vitiligo patients [44]. These basic findings are confirmed by several descriptive studies. The higher levels of norepinephrine are detected in vitiligo patients at an active phase of disease [45]. Significant correlations between catecholamines’ levels and progressive form of disease were described in 56 vitiliginous subjects [46]. The link between increased level of norepinephrine and destruction of melanocytes might be an essential element of oxidative stress theory of vitiligo pathogenesis. Mental stress causes activation of the hypothalamic–pituitary–adrenal axis, which secretes catecholamines. Monoamines and their metabolites stimulate α-receptors of skin arterioles, leading to microcirculation disturbances and hypoxia. As a result, overproduced oxygen radicals cause damage of melanocytes [47]. Also, the activity of acetylcholine esterase is lower in depigmented skin and grows during repigmentation process [44]. Schaullreuter explained a substantial contribution of H2O2-mediated oxidation of acetylcholine esterase to the oxidative stress in vitiligo [48]. Two studies were the most relevant to the topic of our study. Lai Y. et al. selected 25 studies with 2708 cases of vitiligo to find the prevalence of disease among them. Analysis of the results demonstrated that patients with vitiligo were significantly more likely to suffer from depressive disorders than healthy volunteers. The total prevalence of depression among patients with vitiligo was 0.253 (95% CI 0.16–0.34; P<0.001), and the pooled odds ratio was 5.05 against the control (95%CI 2.21–11.51; P< 0,001) [9]. The second meta-analysis was conducted by Osinubi and co-authors and was aimed at establishing the prevalence of psychological symptoms or disorders in people with vitiligo. This meta-analysis included 29 publications involving 2530 patients, and the authors found that approximately one in four people with vitiligo suffered from depression, and one in seven was affected by anxiety. The authors have repeatedly emphasized the heterogeneity of the studied groups and tools used and reported that the overall prevalence of anxiety ranged from 33% to 46% [12]. In fact, the lack of control over the screening tools utilized to measure anxiety is the major limitation of the previous meta-analyses and the cause of large heterogeneity. There are several differences between this meta-analysis and our work, which mostly relate to the primary aim. While we focused exclusively on anxiety, Osinubi and co-authors covered a broad range of psychological disorders: depression, anxiety, social phobia, agoraphobia. Second, we included more studies in our meta-analysis that is explained by a two-year interval between two studies during which a number of additional publications appeared.

Our study has several strengths and limitations. Firstly, we tried to minimize publication bias strictly following the rules of study selection for systematic reviews. Secondly, our meta-analysis includes studies with different screening tools from different countries and world regions. Thirdly, our study is dedicated to evaluation of the prevalence of anxiety exclusively among vitiligo patients. However, there are certain limitations and the main one is moderate heterogeneity as a result of broad criteria for inclusion. This limitation derives from available publications on the study topic as they are often imprecise in identifying what is counted and not counted as anxiety in terms of type and severity. Due to this fact, the results of our study should be generalized with a caution. Secondly, the wide range of diagnostic tools may impact on study results. On our best knowledge, there is no unified and evidence-based tool for assessment of anxiety in patients with skin diseases. Finally, different cultural and social conditions in studies’ environment may also contribute to heterogeneity of our meta-analysis. Nevertheless, it is well-known that psychological and psychiatric disorders might be strongly associated with ethnical, cultural and social factors [4950].

Conclusions

In conclusion, the patients with vitiligo suffer from anxiety as frequently as do individuals with such severe skin conditions, as psoriasis or eczema. Although vitiligo patients present with no symptoms apart from decolorated skin patches, this pathology is accompanied with various psychological problems. Dermatologists and other specialists dealing with vitiligo patients should be aware of their predisposition to anxiety and be able to envisage correctional interventions to alleviate the burden of their mental distress. Clinical guidelines have to contain information about effective screening and management of anxiety among vitiligo patients. Finally, we did not find statistically significant impact of various risk factors on anxiety rate. This fact emphasizes the global burden of vitiligo that is not dependent on patient’s gender or ethnicity.

Source

Vitiligo and Self-Esteem: Psychological Effects

Article written by Charity Nyawira

Medically reviewed by Amit G. Pandya, M.D., President of the Global Vitiligo Foundation

Vitiligo is a skin condition in which people lose skin pigment and develop patches of lighter skin, called macules. These patches, which can be white, pink, red, or brownish in color, can be widespread or may only affect a small area of the body. Vitiligo is not contagious — no one can get vitiligo through physical contact, sexual activity, or sharing utensils with a person who has the condition.

The effects of vitiligo can have a direct impact on the self-esteem of people who are living with the condition, and can lead to anxiety, depression, and relationship issues. Fortunately, there are ways of coping with the effects of vitiligo on self-esteem.

The Impact of Vitiligo on Self-Esteem

A study on the correlation between vitiligo and self-esteem found that the majority of people with vitiligo deal with low confidence and reduced self-esteem. According to the study, 70 percent of women and 54 percent of men who participated experienced self-esteem issues as a result of their vitiligo. The study also showed that self-esteem was significantly impacted among people who had vitiligo on exposed areas of their bodies. Those with darker complexions have also been shown to struggle more with their vitiligo, as the loss of pigment (depigmentation) is more visible on darker skin.

It can be frustrating to feel different because of vitiligo. As one MyVitiligoTeam member said, “Having vitiligo is a daily mind battlefield/rollercoaster. It can tear you into pieces emotionally. There are times when I feel I’m not normal, especially if the flaws are exposed. This disease can consume a person mentally. I also don’t wear shorts. I love the fall/winter season where you can cover up.”

While coping with these feelings can be challenging, there is hope for people who face emotional distress due to vitiligo. One study found that people with vitiligo were better able to cope with their feelings by participating in cognitive behavioral therapy (CBT), a type of therapy that focuses on addressing thoughts and behaviors that have a negative impact on a person’s well-being. This can significantly affect emotional health, because people with higher self-esteem have been shown to cope better with their vitiligo than those with lower self-esteem.

How Vitiligo Contributes To Low Self-Image

People with vitiligo may deal with poor body image and low self-esteem for a number of reasons. One cause involves the unpredictability of the condition. People with vitiligo may worry about their depigmentation worsening because the progression can be hard to predict. Patches of depigmented skin may remain the same for years, or could progress quickly to cover the entire body. As one member of MyVitiligoTeam said, “I don’t think I can live with myself if this becomes worse. I’m in the very early stages, and I don’t see myself being able to live like this!”

In addition, people with vitiligo may try to hide depigmentation using clothing or makeup to avoid comments or unwanted attention. This may cause stress and impact self-esteem. One study found that some people with vitiligo report having strong feelings of dissatisfaction with their appearance, even when patches of lighter skin are covered.

Feeling a sense of disempowerment — having no control over the progression of your depigmentation — is another way vitiligo may contribute to a reduction in self-esteem. Vitiligo is one of many chronic skin diseases that currently has no cure. While some drugs and treatment options, such as phototherapy, can help reduce depigmentation, these treatments do not prevent vitiligo from progressing.

Emotional Impact of Vitiligo on Children and Adults

Both children and adults can face emotional distress as a result of vitiligo. In particular, teenagers between the ages of 15 and 17 were reported to be the most self-conscious about their vitiligo among all pediatric age groups.

Children may face unique challenges, including strained peer relationships, reduced socialization, and social issues that may carry into adulthood. One of the biggest contributors to reduced self-esteem can be a misunderstanding of the condition.

Dr. Lisa Schuster, a licensed pediatric psychologist with the REACH Clinic at Children’s Medical Center in Dallas, Texas, explained that providing basic information about vitiligo will help children and others understand and dispel misunderstandings about the condition. “I think it is important for other children to understand the fact that this is not an infectious disease, because we want them to know that they can have close physical proximity with a child who has vitiligo and it won’t rub off on them,” she said.

Mood Disorders, Low Self-Esteem, and Vitiligo

People with vitiligo may experience psychological stress related to their condition, including depression and social anxiety. One member of MyVitiligoTeam wrote, “Having vitiligo can be very depressing. It has affected me a lot. Mostly when going out, people just look at you or don’t want any skin contact with you. It’s hard being in public.”

Another member described challenges involving covering up their vitiligo: “I have to use lots of makeup on my face to go to work. I start at 11:30 am. I have to start getting ready two hours early just to do my makeup. I’m 49 years old. I never used makeup. Sometimes I feel OK. Other times I feel like I’m wearing a mask.”

Depression and Vitiligo in Children and Adults

Depression affects both children and adults. Even parents and relatives of children with vitiligo may experience anxiety and depression.

Recognizing the signs of depression and other mental health issues is the first step to finding the right treatment and support. Dr. Schuster pointed out some patterns that may suggest a child is depressed:

  • Significant changes in mood, including a depressed or irritable mood
  • Sudden withdrawal from family and social activities
  • Poor sleeping habits
  • Changes in appetite
  • Self-deprecating comments, such as “I’m worthless”
  • Saying they are depressed

Signs of depression in adults may also include hopelessness, suicidal thoughts, losing interest, sadness, self-accusation, and suicidal ideation, among others. Signs of anxiety may include irritability, fear, stress, inability to relax, restlessness, and worry.

Treatment for Depression and Anxiety in Vitiligo

While depression and anxiety can be challenging to live with, these conditions may be treated in a number of ways. Some approaches to improving depression and anxiety in both children and adults with vitiligo include:

  • Therapy — Psychotherapy can be an effective way to manage depression and anxiety. Specific types of therapy include CBT and acceptance and commitment therapy (ACT).
  • Medication — Several medication options can be used to treat depression and anxiety, including antidepressants and anxiolytics, respectively.
  • Proactive management — Working with a mental health professional can help you detect the early signs of anxiety and depression, and prevent progression.

How Parents Can Support Children and Teens With Vitiligo

There are many ways for parents of children with vitiligo to provide support, Dr. Schuster said. Parents must first deal with their own reactions so they don’t pass on stress to their children. “For example, if you are worried or upset, your children will feel upset too,” she said.

Parents should also explain vitiligo to children in such a way that it doesn’t frighten them or cause unnecessary anxiety, she noted. Parents should aim to “increase their comfort with what is going on,” Dr. Schuster advised. Rather than just telling children not to feel embarrassed, parents should allow children to talk about their feelings — if they want to.

When children with vitiligo are entering new environments or interacting with new people, parents should proactively educate the people who will be around their children. Educating others about vitiligo can help avoid social stigmatization and allow children to fit in more easily, Dr. Schuster explained.

Listening to your child and following their lead is crucial in helping them cope. Some children, for example, are not interested in treatment. Instead of continuing to push or pressure them to seek treatment, Dr. Schuster advised parents to allow their children to have a say in whether or not they would like treatment — and, if so, when.

Finding Self-Worth To Improve Self-Esteem With Vitiligo

There are many ways in which adults, teens, and children with vitiligo can help improve their self-esteem. Please realize that your self-worth is not tied to what your skin looks like. Try to find someone or something that brings you joy. Stay in the positive zone.

Source 

 

The History of Word Vitiligo Day

How did a small local event to help people with vitiligo in Nigeria develop into a huge global movement in less than a decade? And how did it get so much support that more than 500,000 have now signed a petition asking the UN for official recognition? This is the extraordinary tale of Word Vitiligo Day (WVD), which from humble beginnings has grown into a global day of celebration and action that takes place every June 25th in support of over one hundred million vitiligo sufferers worldwide.

World Vitiligo Day Prequel

The first national “Vitiligo Day”was inaugurated by Dr. Savita Malhotra from the Post Graduate Institute of Medical Education and Research (PGIMER) in Chandigarh, India, sometime before the year 2010. It was observed in India annually on May 19 until year 2015, when India has accepted the World Vitiligo Day celebrations on June 25th, – thanks to efforts of Prof. Davinder Parsad.

In 2010, by Steve Hargadon, founder of Vitiligo Friends, has voiced the idea of the international vitiligo awareness day, but it went nowhere that year.

Ogo Maduewesi, Founder and President of Vitiligo Support and Awareness Foundation (VITSAF) in Lagos, Nigeria, picked up idea for vitiligo awareness day in 2011. Ogo and handful of activists held the Vitiligo Purple Fun Day at the shopping mall in Lagos on June 25th 2011, in memory of late King of Pop Michael Jackson and his struggle with vitiligo. Ogo also started an online petition, which gathered 111 signatures before the end of the year. The original vision was to bring this ‘forgotten’ disease into the public eye, by raising awareness, portraying its true nature, and debunking common vitiligo myths. And from Ogo’s vision and that small but very important local event, a major global movement would grow…

World Vitiligo Day 2011 Nigeria

World Vitiligo Day Goes Global

Yan Valle, CEO of Vitiligo Research Foundation (VRF) based in New York, USA, saw the potential of Ogo’s idea for an international day of action, to bring the disparate and disorganized vitiligo community together in a common purpose, and to shine a light on challenges faced by those suffering from vitiligo.

So, the global WVD campaign was launched, marketing materials designed and distributed, and promotion started in early 2012. And the UN petition found a home on its very own website 25June.org. The onset of the campaign has been fueled by Aksenov Family Foundation, whose generosity has been vital in ensuring that WVD has become a global force that’s enriched many lives and brought vitiligo onto the mainstream health agenda.

June 25th 2012 saw World Vitiligo Day mark 2 take place. This was a truly global affair. The first press conference of the campaign was organized by VRF and Prof. Torello Lotti at the University of Guglielmo Marconi in Rome. At the same time, street events took place in Australia, Botswana, Brazil, Chad, China, the Czech Republic, France, India, Macedonia, Nigeria, Russia, the UK and USA. The event surpassed all expectations: it was clear that WVD was going to be something big!

And so it proved. World Vitligo Day began a journey across the world, thanks to the idea of a different country hosting the headquarters each year. Rome, Italy (2012), Detroit, USA (2013), Chandigarh, India (2014), Shenyang, China (2015), Prague, the Czech Republic (2016), Sao Paulo, Brazil (2017), Boston, USA (2018), Hanoi, Vietnam (2019), Zagreb, Serbia (2020), Jakarta, Indonesia (2021) all took their turn.

The twelfth annual World Vitiligo Day will take place on June 25th, 2022 – with Mexico playing host to this major event, under the presidency of Prof. Jorge Ocampo Candiani. The theme of WVD 2022 is ‘Learning to Live with Vitiligo’ and this marks a pivot from something that was purely about raising awareness, to a wide-ranging initiative that focuses on patient and doctor education. Vitiligo awareness is making large strides in Mexico, thanks to tireless work of Mexican Foundation of Dermatology, under the presidency of Dr. Rossana Janina Llergo, and recently established Vitiligo Foundation of Mexico, under the leadership of Dr. Karen Férez.

Within just a few short years World Vitiligo Day has become one of the biggest, grassroots health events on the planet. And during that time the number of signatures on the petition has exploded – passing the 500,000 mark during 2015.

The Future

 

World Vitiligo Day has become a global healthcare phenomenon. It is now a major part of the calendar for the estimated 100 million people across the world who suffer from vitiligo. Thanks to World Vitiligo Day their voices will be heard and this disease will get the attention it deserves. And one day, perhaps sometime soon, we will end the hurt and find a cure for vitiligo.

To this date, WVD Presidential Committee and VRF coordinate the global effort, while national and local vitiligo support groups organize conferences, walks, picnics, parades, and other events. Also, clinics and volunteer doctors offer free skin screening programs, education and consultations to the public. With all this activity comes attention – and TV channels, radio stations, newspapers and internet influencers now cover WVD.

The World Vitiligo Day Presidential Committee:

  • Prof. Jorge Ocampo Candiani, MD, Chair of the Dermatology Department at Hospital Universitario De Nuevo Leon – WVD 2022 President
  • Dr. Srie Prihian Gondokaryono, MD, PhD, Head – Indonesian Pediatric Dermatology Study Group – WVD 2021 President
  • Prof. Ivana Binić, MD, Director of Clinic of Dermatology and Venerology in Niš, Serbia – WVD 2020 President
  • Prof. Nguyen Van Thuong, MD, Director of Vietnam National Hospital of Dermatology and Venereology, Vietnam – WVD 2019 President
  • Prof. Paulo Cunha, MD, Chairman of the Department of Dermatology in Jundiaí Medical School, Brazil – WVD 2017 President
  • Prof. Jana Hercogova, MD, Chairwoman Department of Dermatology Bulowka Hospital, Czech Republic – WVD 2016 President
  • Prof. Xing-Hua Gao, MD, Chairman of the Dermatology Department at the No. 1 Hospital of China Medical University, China – WVD 2015 President
  • Prof. Davinder Parsad, MD, Professor at Department of Dermatology PGIMER, India – WVD 2014 President
  • Prof. Henri Lim, MD, Chairman Department of Dermatology, Henry Ford Hospital, President American Academy of Dermatology, USA – WVD 2013 President
  • Prof. Torello Lotti, MD, Chairman Department of Dermatology, University G. Marconi of Rome, Italy – WVD 2012 President, Chair of WVD Presidential Committee
  • Ogo Maduewesi, CEO and President of VITSAF, Nigeria – Vitiligo Awareness Day 2011 President, co-Founder World Vitiligo Day campaign
  • Yan Valle, CEO Vitiligo Research Foundation (USA), co-Founder and spokesperson of the World Vitiligo Day campaign.

World Vitiligo Day 2020 Org Committee

source

Vitiligo Kinder Tag

June is Vitiligo Awareness Month,

June 25th is World Vitiligo Day, AND from

June 16th -18th there is a Children with Vitiligo Weekend!

HOORAY! 🥳

Being a child with Vitiligo comes with challenges, Therefore it is really important to offer the support necessary for each child – from medical advice to a big warm hug.

The Deutscher (German) Vitiligo-Bund e.V  organised a weekend away for Children with Vitiligo in Fulda, Hessen. As the only organisation for patients with Vitiligo in Germany, the support group planned a full agenda for children and their families.

The aim was to be open, listen, share experiences, build confidence and enjoy meeting other children with Vitiligo.  Through art and drawing, discussions with dermatologists, yoga sessions and meeting authors of Vitiligo books, the children and families had the opportunity to embrace and understand Vitiligo from all perspectives.

16 families and 24 children took part of this exciting weekend, to connect and come together through Vitiligo and it was a great success!

Parents and family were also invited to join and be part of the workshops, discussions, yoga, and other activities to help support the children with vitiligo.

After an introduction evening for all, the children made friends easily and the parents too.  Sharing their experiences, their stories, and seeing vitiligo in other children gave a positive vibe and strength to the weekend – this increased awareness and acceptance.

Dermatologists presented top tips and up-to-date information, book readings from an author, drawing and writing exercises for the children and adults – all contributed to an amazing mix of activities for the weekend.  A celebration of a birthday ended up in a water fight which helped us all cool in the summer heat and was very welcome!

Needless to say – longer together would have been better with so much to discuss and time to build relationships.  We hope that the weekend will be repeated again and again – for more families and children to benefit from.

Thank you Deutscher (German) Vitiligo-Bund e.V for the amazing organisation to make this happen.  June really is special month for us with Vitiligo.

Iltefat Hamzavi, MD, Reviews Surgical Treatment Advances for Vitiligo

The 2023 Pigmentary Disorders Exchange Symposium held in Chicago, Illinois, from May 5th to May 6th, covered numerous hot topics in managing pigmentary disorders. Hosted by conference co-chairs Pearl Grimes, MD, and Jill Waibel, MD, faculty members met for the 2-day conference to discuss the pathogenesis of vitiligo, hyperpigmentation, medical and surgical treatments for vitiligo, cosmeceuticals for photodamage, and more.

Iltefat Hamzavi, MD, spoke with Dermatology Times® to review key highlights of his session, “Vitiligo Surgical Treatment Advances,” including punch graft techniques and non-cultured epidermis suspension.

Hamzavi: I’m Iltefat Hamzavi from Henry Ford Hospital, Hamzavi Dermatology, and Dermatology Specialists, and a dermatologist in the Detroit area. And we’ll get jump into some of the points of the talk today. So, I had the good fortune of joining as inaugural faculty with Pearl Grimes and the rest of the group to look at vitiligo surgery. So, we had a session on hypo and depigmentation, and I was charged with the responsibility of talking about vitiligo surgery. So, at the meeting, we talked about the role of the immune system on causing vitiligo. But the melanocytes also are an area of destruction and dysfunction. And so in order to really repigment individuals, you have to manage the immune system, but then you have to create the milieu for the melanocytes to come back into the skin. Sometimes melanocytes just don’t want to come back in there.So there’s a role for vitiligo surgery. Vitiligo surgery can provide rates of repigmentation you can almost never get with phototherapy, topical agents or systemic agents. But if you don’t manage the immune system, the transplant procedure will not work. And we covered a variety of different transplant options. There is the traditional punch grafting where you take a larger punch, then you take another punch of the recipient site that’s smaller, and you place a larger punch in that area. That can give you good results for smaller areas. Talked about blister grafting where you create a blister and transplant the blister on the recipient side. We talked about split-thickness skin grafting, which is basically what sounds like, when you take a split-thickness graft, you dermabrade the vitiligo area and place it on top.

We spent most of our time talking about non cultured epidermal suspension technique also known as MKTP, melanocyte keratinocyte transplant procedure. These non-cultured epidermal suspension techniques have become the preferred technique for many of us. It allows you to treat a larger area with a smaller donor area. And so if you’ve managed the immune system, or you have segmental vitiligo, you can often use that. So as many of the attendees knew, we categorized the ideal surgical patient as somebody whose immune system is stable, their vitiligo is not progressing. And within that group, there’s 2 subgroups. There’s the segmental vitiligo where it only covers one segment of their body, and there’s nonsegmental, vitiligo. Nonsegmental vitiligo often has an immune activity, it’s active, but it goes through active and quiescent phases, versus segmental often is burnt out. Segmental patients tend to have a better response than nonsegmental, partly because the immunomodulation that’s occurring in the skin. And so with both of these types of subgroups, if you pick the right patient and location, you can have some dramatic results. And we talked about the rates of the repigmentation, they approached anywhere from 71% to 92% repigmentation in segmental vitiligo, and around 54% to 60% for nonsegmental. And that pigmentation tends to hold over 2 years based on some studies that have been presented, and again in this systematic reviews, it showed that split-thickness skin grafts and non-cultured epidermis suspensions were the most successful techniques. But our data is still generating, it doesn’t have the same robust nature as the pharmaceutical trials.

The ideal treatment also involves an awareness of where you can treat. So generally we want to treat 40 to 100 square centimeter locations, we would like to use an appropriate dressing process. And then you also have to have a nursing team. The nursing team’s role is to help you obtain the graft where you often from the hip, you process that tissue with the non-cultured epidermis suspension technique and the MKTP technique by heating it in an incubator and stripping off the collagen and dermal cells. And then you will continue to process that until the point where you are able to scrape the dermal components from the epidermal cells and you end up with a mix of keratinocytes and melanocytes. You spin those cells down and we suspend them in a solution and you convert that solid graft into a liquid solution. And then you dermabrade or laser abrade the recipient site, let’s say in the face, and you spray that solution over there and then place a collagen dressing or a gauze dressing and over 6 to 7 days, we leave that dressing in place. And we showed pictures of the face, the legs, and arms, having significant degrees of repigmentation.

And then we talked a little bit about adjunct techniques to preserve the level of pigmentation. But there is nothing that we have today for vitiligo that repigments to the degree and the speed that the vitiligo surgery can offer. We finished up by talking about some new commercial options, which are going to FDA review, using kits that will allow this technique to be much more accessible. And we presented an FDA-approved trial, where I believe it’s around 56% of patients had greater than 75% pigment. They’re not able to use a VASI score yet for these areas. But we’re working on that. But the VASI is the primary outcome measure for many of the topical systemic trials. But this measure of degree of repigmentation, more than 56% of people achieved that more than 75% pigmentation rate versus 0% in one arm, and about 12% was given to the other arm. So a great degree of improvement that was sustained with very few side effects ever noted. And we showed pictures of that. The patients served as their own control in these trials. And so this was comparing the area that did not receive treatment compared to treatment area that did receive treatment. So we finished the lecture summarizing the appropriate candidates, we talked about the appropriate expectations of the degree response. We talked about what patients to avoid, we talked about the upcoming new research. And we talked about how to continue to maintain the immunostability of the patient so that you don’t get a recurrence of vitiligo after you do the surgery. And hopefully at the end of it, the audience was able to at least have an understanding of vitiligo surgery. And then hopefully, over time, develop the techniques we can apply that to that patient whose immune systems is managed, they just cannot repigment them.

Dermatology Times: What are a few highlights from the 2023 Pigmentary Disorders Exchange Symposium?

Hamzavi: I’m just so excited that we are able to actually have a conference on pigmentation. So there are some excellent talks on dermal pigmentation done by Dr. Heather Woolery Lloyd, and she talked about the different classifications and different agents that we can use. She talked about oral agents that might trigger pigmentation. This is very disfiguring pigmentation that can occur. We had some great talks on melasma options and treatment of hyperpigmentation with Dr. Andrew Alexis. And he gave us an extensive summary of treatment options and other from the therapeutic ladder of photoprotection, topical intervention, systemic interventions and procedural based interventions. And then we also had some great lectures by Dr. Berson, and she spoke about the numerous agents that help manage hyperpigmentation and where they might be useful. And Pearl Grimes also gave a very, very strong overview of these pigmentary options across the different disease states. And those are the portions that I was able to attend. But really an in-depth conference. If you really want to improve your ability to treat hyperpigmentation and depigmentation, I haven’t seen a conference like this.

[Transcript edited for clarity]

Image Credit: Envato Elements

Source

Advancing Medical Treatments for Vitiligo With Amit Pandya, MD, FAAD

Pandya gives an in-depth overview of his vitiligo treatment pearls from the 2023 Pigmentary Disorders Exchange Symposium.

The 2023 Pigmentary Disorders Exchange Symposium held in Chicago, Illinois, from May 5th to May 6th, covered numerous crucial topics in managing pigmentary disorders and featured a powerhouse list of faculty members. Hosted by conference co-chairs Pearl Grimes, MD, and Jill Waibel, MD, faculty members and attendees met for the 2-day conference to discuss the pathogenesis of vitiligo, hyperpigmentation, medical and surgical treatments for vitiligo, cosmeceuticals for photodamage, and more.

Amit Pandya, MD, FAAD, a dermatologist in Sunnyvale, California, the president of the Global Vitiligo Foundation, and director of the pigmentary disorders clinic at the Palo Alto Medical Foundation, spoke with Dermatology Times® to review his session, “Vitiligo Medical Treatment Advances,” as well as important topics from the meeting that he enjoyed.

Transcript

Pandya: Hello, my name is Amit Pandya. I’m the director of the pigmentary disorders clinic at the Palo Alto Medical Foundation in Sunnyvale, California. And I’m also an adjunct professor in the department of dermatology at UT Southwestern in Dallas, Texas.

Dermatology Times: What are a few key highlights from your session, “Vitiligo Medical Treatment Advances?”

Pandya: I was excited to present advances in medical treatments for vitiligo at the recently concluded Pigmentary Disorders Exchange in Chicago. I talked about the exciting advances in JAK inhibitors for vitiligo with the recent approval of a topical JAK inhibitor ruxolitinib last year by the FDA. I talked about the phase 2 studies for this medication, which showed excellent results after one year, 50% of the patients got 75% of the color back on their face, and 1 out of 3 got 90% back on their face. The results on the body was that half the patients got 50% of the color back on their body. And this is with no phototherapy. This is simply with the cream and just normal sun exposure. I also showed that the responses were better on the head and neck, the trunk and the proximal extremities. But there was still a significant number that got improvement on the hands and feet. The side effects were very minimal, with less than 10% getting acne or pruritis. And the rest of the side effects were equal to placebo. So, it seemed to be very safe. And when we added narrowband UVB to ruxolitinib in a separate study, which was recently published, we got even better results, even better repigmentation. I showed the results of the phase 3 study which led the FDA to approve it. And that showed very similar results to the phase 2 study with again, half the patients getting 75% of their color back on their face. And the side effects again being very minimal with less than 10% getting acne. I then went on to talk about the exciting oral treatments, ritlecitinib, a JAK3 inhibitor, and that one was used to treat patients with active vitiligo, so it was a higher bar. And in that one, when they looked at the F-VASI75 or the improvement of 75% in the face, 1/3 of the patients reached that result after one year. And overall, there was a 66% improvement on the face and lower on the whole body. And then finally, I talked about the very recent results that were released on povorcitinib, a JAK1 inhibitor, and in this one, the patients who are treated for 36 weeks so far, these are like hot off the press, we don’t even have the 52 week results available. But in this one, it was similar in that F-VASI75, 1/3 of the patients achieved that F-VASI75. And then when it came to the T-VASI50, it was about 1/3 achieved 50% improvement on their body. Again, side effects for this one, just like the ritlecitinib, were very similar to placebo. So, these were the exciting results I was able to show with the medications, especially JAK inhibitors that are approved and also in the pipeline.

Dermatology Times: What did you enjoy about the 2023 Pigmentary Disorders Exchange Symposium?

Pandya: The Pigmentary Disorders Exchange was the first meeting that I’ve been to that was solely devoted to pigmentary disorders. It covered the wide spectrum of lectures on each of these disorders, including vitiligo, melasma, post-inflammatory hyperpigmentation, and photodamage. And what I really loved about it is that it really covered everything from A to Z, from the pathogenesis of the condition to medical treatments, to procedural treatments of these conditions. And they really went into the science of the pathogenesis. And then that helped you understand why these treatments work and which treatments should be selected. And of course, I can’t help but mention the camaraderie and just the social activities and meeting all my friends and leaders in pigmentary disorders. And a chance to talk to the audience one on one about these disorders was really a real treat for me. I really enjoyed going there.

Source

Image Credit: Envato Elements

New therapy for vitiligo patients

For a long time, vitiligo was considered purely a cosmetic issue, but the disease often causes significant stress for those affected. What effective therapies are available? Increased public acceptance, exemplified by models like Winnie Harlow, has brought vitiligo to international catwalks. The development of new therapies and active ingredients provides hope for vitiligo patients in achieving a better quality of life.

Tedious and individual: Treatment of vitiligo

Vitiligo is a chronic skin disease where the body’s own immune system attacks the pigment-forming cells. Treating vitiligo has long been considered challenging and unpredictable in dermatology. Patients who visited dermatologists with this condition were often met with shrugs and the information that nothing could be done. However, this is no longer the case today. “We can now treat vitiligo much more effectively, thanks to recent years’ important insights into the disease’s development and causes.” – Prof. Dr. Michael Sticherling, Deputy Clinic Director, Dermatology Clinic, University Hospital Erlangen.

Doctors use black light to visualize the areas of skin where the pigment-forming cells have been mostly or completely destroyed. The cause is likely an overreaction of the immune system in combination with hypersensitivity to oxygen radicals. The exact causes are not entirely clear, and it is probably an interaction of various processes that differ among patients.

The causes of vitiligo are diverse, and there are different theories. One theory suggests an autoimmune reaction, where the body’s defense system targets the melanocytes, the pigment cells of the skin. Another theory suggests a disrupted redox ratio, meaning an imbalanced oxygen radical ratio in the melanocytes, as a significant factor. There is also a theory that suggests increased melanocyte migration, as well as a theory that combines all three factors. It is likely that all three theories hold some truth and may vary in importance and relevance among different patients.” – Prof. Dr. Michael Sticherling, Deputy Clinic Director, Dermatology Clinic, University Hospital Erlangen.

Differently effective: Therapies for vitiligo

Cortisone, an active ingredient that suppresses the immune system, can be used for external treatment of vitiligo. However, due to its side effects, it should not be used as a long-term therapy. “The effectiveness of cortisone varies greatly, with some patients responding well, and different body regions responding differently. The main problem with cortisone usage lies in its side effects, such as skin thinning and increased susceptibility to infections. In the case of a chronic disease like vitiligo, long-term cortisone therapy is not justifiable.” – Prof. Dr. Michael Sticherling, Deputy Clinic Director, Dermatology Clinic, University Hospital Erlangen.

Another possible active ingredient for external use is known as calcineurin inhibitors:  “Calcineurin inhibitors also have an immunological effect. Some smaller studies have shown effectiveness, particularly in combination with UVB light. However, the effectiveness is not 100 percent, and it does not work for all patients.” – Prof. Dr. Michael Sticherling, Deputy Clinic Director, Dermatology Clinic, University Hospital Erlangen.

Vitiligo therapy often involves a trial-and-error approach to find what works best for each individual patient. It requires patience and perseverance until the therapy is successful. This also applies to phototherapy, which includes local irradiation with UVB light or whole-body phototherapy. The short-wave light is intended to stimulate the formation of new pigment cells. “We also use UVB light for other skin diseases, but it should be viewed critically due to its potential to promote skin aging and even the development of skin cancer. This is an important consideration that needs to be taken into account for vitiligo patients

“We also use UVB light for other skin diseases, but it should be viewed critically due to its potential to promote skin aging and even the development of skin cancer. This is an important consideration that needs to be taken into account for vitiligo patients.” – Prof. Dr. Michael Sticherling, Deputy Clinic Director, Dermatology Clinic, University Hospital Erlangen.

New therapies: JAK inhibitors in vitiligo

Prof. Sticherling is currently researching new active ingredients called JAK inhibitors. These drugs can suppress the specific immune system dysfunction in the skin of vitiligo patients, although not all patients respond to them. “This group of drugs, or active ingredients, was discovered more or less by accident while treating other diseases, particularly serious tumor diseases. It was found that vitiligo, coincidentally present at the same time, decreased under the therapy. Only then were these drugs further developed.” – Prof. Dr. Michael Sticherling, Deputy Clinic Director, Dermatology Clinic, University Hospital Erlangen.

 

JAK Inhibitors

Janus kinase inhibitors include several active ingredients used for autoimmune diseases, among other conditions. In March 2023, the European Medicines Agency (EMA) and the Federal Institute for Drugs and Medical Devices (BfArM) published a warning letter for some of these active ingredients in coordination with the manufacturers. This update provides information on warnings and precautionary measures for the use of already approved drugs containing these active ingredients. (Reference)

A new cream with a JAK inhibitor was recently approved in the EU and will be covered by statutory health insurance companies. Georg Pliszewski from the Vitiligo self-help organization “Deutscher Vitiligo-Bund e.V.” expressed his thoughts

 

“It definitely marks a new chapter in vitiligo therapy, as it has just been approved in Germany and Europe. However, we are yet to determine the side effects of this new product, this new cream. It will be the responsibility of doctors, particularly dermatologists prescribing the cream, to monitor their patients.”-Georg Pliszewski, German Vitiligo Federation e.V.

Research into new active ingredients has stimulated studies on vitiligo, its causes, and potential therapies. This represents a positive development for Georg Pliszewski. However, the decision regarding therapy, whether to pursue it or not, remains a careful consideration for patients in consultation with their doctors.

Many affected individuals have had positive experiences with psychotherapeutic support and engaging with other patients in self-help organizations.”

Credit for all Images : Bild:BR

Source