Skip to main content
All Posts By

Marketing

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?

Vitiligo, Educate, Inspire, Support SXM – VEISS 2nd annual mini-conference- ST MAARTEN 1st – 3rd December 2023

The second conference organized by VEISS association took place around the theme “Vitiligo and Mental Health”.

Jacqueline Vrolijk, president, and Gerline Isaac, Founder, took turns, throughout these days, to present the actions, history, and projects of VEISS.

During these 3 days, the various speakers – doctors, psychologists, psychotherapists –focused on the impact of vitiligo on patient’s mental health: touching testimonies, revealing the difficulties of each in their daily life, stigmatized in their personal and professional lives (for example, a flight attendant from a large company who can no longer work because of her pigmented hands). Living on an island can exacerbate the problems: it is difficult not to be noticed, if the child with vitiligo can be ostracised, the whole family is as well. Another problem: only two dermatologists on the island of St Martin.

The important role of associations or support groups was highlighted to; break out of isolation, share, be listened to, strengthen self-esteem, offer psychological support, guide on the path to acceptance, resilience etc.

Stephen Taylor, V Strong (USA), and Nicolle Maquignon, AFV, both members of the VIPOC board.

– Tonja Johnson, Beautifully Unblemished Support Group, Florida, USA, with her positive message “love the skin you are in”,

– Akenna Kublal -Trinidad, wishes to bring together people with vitiligo, author, shares her experience and her commitment through writing

– Daniel Kalakech, – St Martin, Vitiligo Explorer SXM, challenge – ascent of Mont-Blanc and Kilimanjaro, donation for research CHU Bordeaux

– Stephen Taylor, – V Strong, Global Vitiligo Foundation (GVF) and VIPOC – necessary and harmonious collaboration of these organizations, “a real symphony orchestra”, for stronger support and representation of vitiligo patients

– Nicolle Maquignon-AFV, VIPOC – history, missions and objectives of VIPOC, access to treatments, new recommendations, impact on quality of life, creation of a regional dynamic with neighbouring islands (Guadeloupe, Martinique, Trinidad, Aruba ..)

Another strong testimony: a 10-year-old pupil, who participated in awareness meetings organized in schools. Indeed, this conference closes the year 2023, devoted to Education (E for Educate). More than 500 pupils/students have benefited from awareness sessions about vitiligo. This is one of the priority missions of VEISS association: break the stigma through education with school initiative programs.

A final session of this type was organized by Gerline[] [/] Isaac, on December 2nd at the Daniel Choisy Professional High School, French zone, with students from the Health and Social option, with the participation of Stephen Taylor and Nicolle Maquignon.

The Minister of Health, the Director of Tourism, the head of Social Services, present during the Conference, provided or renewed their support for the VEISS association.

Strongly involved in its mission, VEISS plays a leadership role, being the first and only association for vitiligo in this Caribbean region. Recognized by the authorities and public services, VIPOC and GVF members, they set up numerous events on the island: Zumba, hikes, charity gala/dinner, and art auction, to raise funds, and benefits from the help of a few sponsors. However, VEISS deserves more support and not to be limited in her ambitions.

 

 

 

 

 

 

 

 

Thank you to the whole VEISS team, for your warm welcome, your energy, and your beautiful smiles, and let’s continue to work together and make a better world for people with vitiligo!