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Vitiligo stories

Colour change: From Dark to White Paul Monteiro’s Story

Paul Monteiro has had vitiligo since he was twelve years old. Monteiro was born with a dark skin color, but due to vitiligo, he lost all pigment. He became so pale that he continuously had to protect himself against the sunbeams. He admits the change of skin was not an easy one.

Paul Monteiro Before Vitiligo

People with vitiligo obtain white spots of different sizes and shapes, which can evolve with time. One of the spots where vitiligo arises often is on the hands and sometimes in the face. The darker the skin, the more obvious the spots are. Not everyone finds it hard to live with this skin disease, whilst others will try all that is possible to get rid of the spots. There are also patients whose spots are taking over almost the complete skin; these patients choose the option to bleach their skin. Paul Monteiro, chairman of the Dutch Patient Association of Vitiligo (www.Vitiligo.nl), has gone through all phases of vitiligo. He became paler by the day, which he really had to adjust to with his Dutch-Indonesian background, but today, he knows how to deal with it.

When twelve years old, Monteiro got vitiligo; at first, it could hardly be seen on his elbows and eyelids. Not long after that, the white spots disappear again, but ten years later, the condition returns quite badly. His roots are in Indonesia, and where others worry about the white spots, it bothers Monteiro that, especially in the summer, depigmentation occurs due to sunrays: the dark spots contrast his pale skin. Monteiro has chosen to start with UVB therapy to color the pale skin, hoping to reduce the contact between dark and light skin.

Paul Monteiro After Vitiligo

Monteiro: “The UVB did not have the effect I wished for. From a dark-colored man with skin type 4/5, I changed into a white man with skin type I in only four years’ time (2008-2012). Where the condition started out locally, it now rapidly grows all over my body. With all my pigment, also my ethnical appearances, of which I was really proud,  disappeared, but I did always stay the same person”.

Monteiro does not regret the UVB therapy:

“When being challenged with a condition like this, you search for solutions. I wanted to find out whether there was a solution which would stop vitiligo. Unfortunately, that cure was not there for me. I had to learn and live with my condition like my GP told me during the first consult I had”.

Despite the advice given, Monteiro is not giving up and is not accepting the fact there is no cure yet. As chairman of the Dutch vitiligo patient association, he is not only fighting to find a cure but also to help the patients get out of their isolation.

People are afraid and feel ashamed, and therefore, they hide themselves. “I did struggle with my condition, but I explained my environment and what it is about and pointed out the fact Michael Jackson was also a vitiligo patient. I do have to be honest; I was facing hard times every now and then. I do not struggle with my appearance; it is the changing of my lifestyle I had to get used to. I really have to be careful with sun tanning; my skin cannot handle the sun. The body needs Vitamin D, but I can no longer be in the sun than 15 minutes. Besides that, I constantly have to use sunscreen, 50 SPF. “

“In The Netherlands, we are lucky with the healthcare system. But my advice is to always stay involved and interactive during the process. That way, the doctors will not only see you as a patient but also as a person. To me, that is an absolute must, as no patient is the same. Take that space to discuss your situation. An open communication helps patients obtain more insight into their own disease and its side effects. Then you will be far more able to understand suggested treatments, and it is then easier to stick to made decisions and agreements on how to treat the condition”.

‘Not only for the cure but also for the care’! Is internationally being established as a guideline to come to a shared plan of treatment?

Mr Stephen Taylor, an active 63-year-old African American who’s not just counting his years but making them count

Meet Mr Stephen Taylor, an active 63-year-old African American who’s not just counting his years but making them count. Diagnosed with vitiligo four decades ago, he’s been on a colorful journey through life, even if his skin might tell a different story.

Retiring from General Motors after an impressive 35-year stint as a reliability engineer, Mr Taylor didn’t let vitiligo put the brakes on his passion for making things work seamlessly. While his skin may have lost its pigment, his spirit remains anything but monochrome.

In his quest for a palette of treatments, he’s tried it all – from vitamin supplements to topical immune inhibitors, and even basked under the glow of phototherapy. Yet, his skin, like a canvas refusing paint, remains 99% void of color. But don’t let that fool you; he’s not faded away. In fact, he’s boldly taken the spotlight as a member of not one, not two, but three vitiligo organizations.

As the General Secretary of the Vitiligo International Patient Organization Committee, Mr Taylor is not just a name on a roster; He is a key player and plays a crucial role in the team’s dynamics and achievements. His dedication doesn’t stop there; he’s been a stalwart member of the VStrong Vitiligo Support Community in Detroit, Michigan, for a whopping 15 years, now donning the hat of the General Secretary. And if that weren’t enough, he’s sitting on the board of directors for the Global Vitiligo Foundation, contributing his wisdom to a cause larger than himself.

This isn’t just about Mr Taylor’s journey; it’s about his commitment to ensuring others don’t face the shadows alone. As a patient advocate, his experience transcends borders – local, national, and international. His engagements with healthcare professional organizations have given him a palette of experiences, painting a unique and well-rounded picture of advocacy. Mr Stephen Taylor isn’t just living with vitiligo; he’s thriving, and in doing so, he’s helping others paint their own vibrant stories despite the stigma that might come with vitiligo.

In the symphony of life, Mr Stephen Taylor’s story is a bold note, refusing to be muted by the absence of color on his skin. His journey is a testament to the fact that life can be lived in full color, no matter the canvas it’s presented on.

Painful process and rebirth of turning ‘white’

Seeing the upside of skin condition, vitiligo

STRUGGLE: Moleboheng Molebatsi, 22, suffers from vitiligo and spent years being alone and bullied.

ONE MORNING when Moleboheng Molebatsi was a teenager, she woke up at 5 am and went to stand naked in the bushes and allowed her uncle to smear her skin with a mixture of ashes and saliva.

This was not part of some ritual but one of the desperate things Molebatsi, 22, did in an effort to cure vitiligo, which affects her skin.

At the time, Molebatsi was struggling to accept the condition that afflicts her.

Another desperate measure she took was to drink concoctions sold as purporting to cure all diseases. Her grandfather even suggested the family change her name to Pulane because the ancestors might not be happy she wasn’t named after anyone.

“Everyone called me Pulane for a while but my mother never liked it. Eventually, they forgot and just continued using my real name. Calling me with the new name didn’t help the condition,” she chuckles.

Molebatsi’s vitiligo started when she was about two years old and when she was 19, she stopped taking treatment like topical cream and that’s when it spread all over her body.

When she first got the condition, her skin had patches of her original dark skin colour and very light ones caused by the condition.

For years, she went through phototherapy light treatment for vitiligo but that didn’t help her. After the treatment, her skin appeared sunburnt and doctors recommended she stop. She then tried micro-pigmentation which involves implanting small particles of natural pigment under the skin in a similar way to getting a tattoo. Molebatsi’s body rejected the procedure as well.

“Some lady said I must use a wine cork. Burn it and apply it to my body. At that time I was tired, and I didn’t use it,” Molebatsi remembers. She was so tired that she stopped taking any treatment and began a journey of self-love. Now, all her pigmentation is gone and she has turned completely light-skinned.

“I am just glad I am alive. I tried almost everything. Even before I turned completely white, I started going out and taking pictures. Turning completely white was like being born again. I was relieved, that I am now one skin tone,” she said.

According to dermatologist Dr Robert Weiss, vitiligo is an autoimmune disease where the immune system is confusing and attacks pigment cells for unknown reasons. “The actual cause is not known,” he said.

Weiss said in some cases, there might be several people in a family with the condition but it is not necessarily hereditary.

Molebatsi is the only person in her family with the condition.

She also says her skin is not painful or itchy as long as she uses sunscreen every day.

Though Molebatsi has completely accepted her condition, she still has to deal with people who don’t understand it and call her names.

“There are still challenges even now. People tend to think I bleached my skin. They still call me names like Khanyi Mbau or even a fake white person.

“People look at me and assume I am albino. The stigma is almost the same as it was the same as when I had patches. At school, it was the worst. They thought if they touched me they would be like me. I was a lonely child at school,” she says.

Weiss said there are differences between albinism and vitiligo. “Vitiligo is an acquired condition that appears at any time after birth. The areas of hypopigmentation are usually in patterns but it doesn’t usually affect the whole body, and never affects the eyes. Albinism is a hereditary condition with the condition present at birth. The entire skin and eyes are affected as well as hair. It is a genetic condition,” Weiss said.

After years of being stigmatised, Molebatsi has now started the Beautiligo Foundation to help those living with the condition understand it and receive support.

“I have always felt alone. I feel like if somebody had started this organisation when I was young I would have dealt with it so much better,” she said.

The foundation hosts workshops at schools and offers support groups for families.

Follow Moleboheng Molebatsi

(@MolebohengMol11) / Twitter

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Disability is not an Inability

These are the 10 Fun Facts about Julie Nasuju You didn’t know as below.

In The research done by Maya Clinic and Oxford University Medical science, vitiligo is a condition in which the pigment is lost from areas of the skin, causing whitish patches, often with no clear cause. In our article we shall look at a living testimony of a vitiligo victim and what she is today;

Julie Nasuju is a Kenyan Model at Model management.com, MC, Deejay, Actress, Motivational speaker who lives with a skin pigment (vitiligo) since her childhood.

Fun Facts 1. Good vibes ambassador.

2. I love my skin.

3. Mother of four.

4. Loves cooking and eating.

5. Sometimes I’m mistaken as either Nazizi or Fena look alike.

6. Once featured as the main model on a Sauti Sol music video.

7. Was a dancer back in the days.

8. Was once a lead singer in a worship team.

9. Was a handball goalkeeper.

10. My life journey is inspiring.

She is also a member of Royal Patches, a platform of the Vitiligo Society of Kenya that organizes meetings and empowerment sessions for vitiligo living Kenyans this is because, In June, a friend of theirs, a 20-year-old girl suffering from vitiligo, committed suicide. That proved it is necessary to reach other vitiligans, support and encourage them.

I kindly welcome your thoughts, comment, likes and shares about the above content on the beautiful living Kenyan Model With vitiligo.

 

You can follow her Instagram page @royal_patches

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The fight against stigmatization

Enam Honya Heikeens a pretty Ghanaian nurse who had her nice-looking black skin completely being dominated by a skin illness known as vitiligo which she has to live with since age 7.

In an up-close with Enam, now the director for Vitiligo Ghana Foundation mentioned that she assists people to fight against the stigma people with vitiligo have to endure because of their situation and indicates that it has never been easy.

In the entire life of Enam, she has had to endure the strange looks people give her and to some extent refrain from any form of contact with her as if she had a communicable disease.

“People are always asking questions about my skin. They always stare at me and there have been instances when community folks don’t want to board the same bus with you or have their kids befriend you because they think the condition is contagious” she added.

Enam had her basic education at Keta State School. She continued to Keta Business Senior High School and later went to Keta Nursing and Midwifery training college all in the Volta region. As stated by Enam, her interest is to keep encouraging people with vitiligo and develop plans to put a limit to the stigma attached to the condition.

You can follow Enam on Instagram @vitiligo_ghana

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If they want to knock me off TV they will have to fire me

When Lee Thomas was diagnosed with vitiligo, he was a 25-year-old TV reporter and a rising star in Detroit. It all happened during some very formative years. While being diagnosed with vitiligo is stressful under any circumstances, you can only imagine how it felt for a person in the public eye back in 1992. Back then vitiligo was a well-kept secret.

In the early 1990s, the cause of vitiligo was still unknown. Scientists had not agreed on the principles that made people suddenly start losing their pigmentation. The notion that vitiligo was an autoimmune disease was being formulated but was nowhere near to being recognized. The patient community was scattered. Dermatologists and scientists had little contact with one another. As there was no accepted theory for the cause, nobody was able to formulate an approach for a cure. As a result, patients were by and large suffering in solitude.

Lee Thomas’ first reaction to having vitiligo was that of shock and anger. As a news anchor, he said he felt he was going to lose everything. After the first shock was over, he started to turn grief into action. He embraced his identity as a reporter and went out on a long-lasting research spree. He wanted to know everything about vitiligo! As his understanding matured, he started to fight for his life on every level. He fought to maintain his positive, happy-go-lucky personality. He became determined not to become a recluse. Ultimately he decided that if they wanted to knock him off TV, they would have to fire him!

His fight soon moved from a personal sphere to a fight for the entire vitiligo community. It started with him establishing the vitiligo support group V Strong in South East Michigan. He reached out to Dr. Henry Lim at Henry Ford’s Health System, who welcomed his energy and enthusiasm. Dr. Lim helped Lee’s support group obtain space within the walls of the Henry Ford Health System. Lim further made sure that every V Strong support group meeting was attended by an MD. As a result, vitiligo patients in the Detroit area started to get a more nuanced view of the disease. They were soon able to distinguish between science-based and what Lee Thomas calls “snake oil”-based treatments. The support groups provided comfort by allowing vitiligo patients to share their history and journey with one another. An inclusive patient community was in the making, and it was growing fast!

Today Lee Thomas sees V Strong as a vibrant community providing the opportunity to share in one’s loss, sorrow, hope, and pride. Nationwide, many gaps are closing. Doctors, scientists, patients, and pharmacologists are talking as the vitiligo community is redefining itself. The discussion within the community has led to a number of approaches to vitiligo. Some patients are calling vitiligo a disease and are vividly supporting the development of novel treatments, whereas others describe the pigment loss as a disorder, hoping that their skin condition is seen as a part of natural diversity.

Lee Thomas has an understanding of both perspectives and emphasizes that people decide for themselves how they adjust to vitiligo. From Lee’s personal perspective, it is, however, important to call a spade a spade. “We need to call vitiligo a disease. If it is not a disease, we will not get resources, and if we don’t get resources, we will not get a cure. It’s that simple!” Getting to a point where the future looks bright has, however, been a long and deliberate battle, fought on a number of fronts. Lee does not want the gains of this struggle to evaporate into thin air.

As an African American, Lee Thomas also looks at vitiligo through the lens of his community. Vitiligo is hard to carry for anyone. For a darkly pigmented person, the contrast caused by the disease becomes hard to hide. For a member of the African-American community, vitiligo may further feel like an attack on a person’s community affiliation. For black males, vitiligo may even feel like an attack on one’s masculinity. “Vitiligo forces you to think through your identity as an African American beyond skin color,” says Lee Thomas. While this may seem obvious, it may require a lot of soul searching. The adaptation is, further, a two-way street. It provides an opportunity for growth, both for the individual as well as for the community. “In this respect, we have over the past 20 years come a long way,” says Lee Thomas.

On a highly personal note, Lee Thomas sees people’s reactions to vitiligo as something that takes time getting used to. “In the beginning, everybody was staring at me.” Lee says that he had to make a specific choice to allow people to stare. Initially, he thought that people were staring because they judged him in a negative way. After a while, he understood that there was not necessarily malicious intent. People just did what he did himself when he got the disease. “You stared at all the different color of the lesions, trying to understand what is going on in your skin.” You can’t fault people for staring. Coming to that realization has helped Lee find harmony in his social interactions.

When you casually mention vitiligo in a discussion, many people bring up a friend or a relative who has the disease. From here the discussion often shifts to celebrities with the disease. The first name to come up tends to be Michael Jackson, followed by both Lee Thomas and the photo model Winnie Harlow. For Lee Thomas going public with vitiligo was to some extent a reaction to the mysticism portrayed by Michael Jackson’s approach. As Michael Jackson did not want to speak about vitiligo in public, Lee Thomas felt he wanted to fill the vacuum. In 2007 he published the bestseller Turning White: A Memoir of Change where he opened up a dialog both within the vitiligo community itself, as well as with the general public. Turning White made Lee Thomas a role model patients could identify with. The vitiligo movement was gaining momentum!

Today the vitiligo community stays in touch with each other both through actual meetings as well as through online forums.  Facebook groups with more than 20,000 members provide forums where patients can share information with one another. Shared experiences, videos, and pictures are reducing the collective stress and stigma. 20 years ago, it would have been difficult to imagine photo models with an uneven skin tone. Today Winnie Harlow is a person who’s easy to admire and identify with. People are proud to put out their photos without makeup or camouflage.

Openness has made the vitiligo community both visible and accessible. A self-aware community that demands a cure is seen as a community that deserves one. This was definitely visible at the World Vitiligo Day Conference in Houston in June 2019, an event that attracted patients, scientists, clinicians, and startup companies engaged in getting new therapies to clinical trials.

When looking at the future, Lee Thomas sees several effective treatments coming together. In a decade or so, we may be in a situation where vitiligo is a disease that, once diagnosed, responds to a standard set of treatments. Lee Thomas’ work does, in a tangible way, bring this day closer.

When Lee Thomas gets the question of what he would say to a young person getting vitiligo today, he becomes serious and makes a short pause. He is gathering his thoughts. This question is clearly important. He has made the transformation himself, and he wants to make sure that there is a helping hand for people walking down the same road. “I would say: How are you doing? I understand what you are going through. You are not alone. You will not only live through vitiligo, but you will also thrive in it. It will be a part of who you are, but it will not be everything you are. Don’t isolate yourself, go on living your life, don’t make it something that changes your personality.” The oxymoron is, however, that while you work on not losing yourself, you tend to come out wiser and stronger at the other end. Anecdotes of how Lee Thomas’ work has helped vitiligo patients over transformative barriers is the reward that keeps him going.

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Lee Thomas Shares His Vitiligo Journey: ‘I Am Not My Disease’

As a broadcast television personality, Lee Thomas was comfortable having all eyes on him.

That was until age 25, when he was diagnosed with vitiligo – and the pigment in his skin began to disappear. The stares from strangers were everywhere: at the gas station; at the grocery store. Some people wouldn’t shake his hand.

Initially Thomas felt hurt – and confrontational.

But he didn’t like what was happening to his personality.

“I started to let this disease turn me into something that I was not,” Thomas said. “I could not stand it. I’m that happy-go-lucky kid … this disease was turning me into something different.”

Vitiligo – pronounced “vit-ill-eye-go” – is a chronic disorder in which skin cells begin to lose color. It is rare and affects people of all races. There is no cure. Michael Jackson had vitiligo, as does model Winnie Harlow, actor Jon Hamm and comedian Steve Martin. Because vitiligo is so rare, people with the skin disorder are often embarrassed or uncomfortable in their own skin. Rude reactions from others can cause people with vitiligo to develop low self-esteem and depression.

Thomas has been through a 25-year journey to accept his ever-changing skin and to thrive in it. Thomas radiates happiness – proof of his emphasis on staying positive to maintain his mental health.

As an entertainment reporter with Fox 2 News in Detroit, Thomas interviews celebrities for a living.

“It’s easy to look at someone from the outside and say, man, they’re living their best life,” Thomas said. “My job seems like it’s a perfect life. But behind the scenes, I’ve always had to deal with this.”

Thomas spoke about living with vitiligo and his journey to acceptance to Blue Cross Blue Shield of Michigan employees on Jan. 22. His appearance at Blue Cross was coordinated by the Diversity and Inclusion department and is one of the numerous sessions that are held for employees throughout the year to learn about different cultures, communities, generations, work styles, and perspectives. His message of self-awareness, acceptance of self and others, and education resonate with the Diversity and Inclusion team’s Be Inclusive campaign to learn about, recognize and embrace individual identities.

As he started his journey, instead of becoming angry at the way people reacted to his appearance, Thomas tried being patient: pausing in the moment to understand the perspective of the other person.

“I couldn’t allow myself to become angered, or a shut-in, or a person who didn’t deal with people – because that was my chosen profession,” Thomas said. “I had to be patient.”

The energy each person brings to a situation is powerful, Thomas said, explaining how he chooses to manage his thoughts to stay positive.

“Try to control your thoughts and manage your thoughts,” Thomas said. “Let it linger for five minutes – and see if there is something I can learn about what I did.”

Now Thomas spreads awareness about vitiligo and more recently started sharing how he has been able to overcome the mental hurdles to stay positive and keep negative interactions from affecting his life.

“I am not my disease. I am just a guy who has it,” Thomas said.

 

Photo credit: Monica A. Drake