Live, enjoy and dare..... also with vitiligo!

Color change: from dark to white

Paul Monteiro has had vitiligo since he was 12 years old.
Monteiro initially had colored skin, but that changed vitiligo he lost all his pigment.
He has turned so white that he must continuously protect himself from sunlight. The color change did not bother him to sit.

People with vitiligo develop white spots of different sizes and shapes, which can change over time.
One of the places where vitiligo often occurs is the back of the hands, sometimes also on the face. The darker the skin, the more noticeable the vitiligo spots. Not everyone has this problem, but people try everything to get rid of the stains. However, there are also vitiligo patients whose white skin predominates and some choose to bleach the rest of the skin.
Paul Monteiro, chairman of the vitiligo patient association (vitiligo.nl), experienced this firsthand. He became lighter and lighter in color. With his Dutch-Indonesian background, this took some getting used to, but now he can handle it very well.
At the age of twelve, Monteiro developed vitiligo; initially mildly on his elbows and eyelids. Not long afterwards the white spots disappear again, but after ten years the condition returns in full force. His roots lie in the Dutch East Indies and while others are concerned about the white spots, what bothers him most is that repigmentation takes place due to the sun, especially in the summer: the resulting dark spots contrast with the almost white skin color elsewhere. He opted for UVB therapy to give white skin more color in the hope of reducing the contrast between dark and light skin.

Monteiro: “But the UVB had the opposite effect for me. In four years (2008-2012) I changed from a black man with skin type four/five to a white man with skin type one!” The vitiligo started locally, but the condition spread completely. And with all the pigment, the ethnic appearance that I was so proud of also disappeared, but I have remained the same person.” However, Monteiro does not regret the light therapy:
“You look for a solution. I wanted to see if there was a drug that could stop vitiligo. Unfortunately, that remedy was not available.”
He had to 'learn to live with it', as his GP told him during the first consultation. However, Monteiro is not resigned to the fact that there is so little that can be done and, as chairman, he is not only committed to improved treatment methods, but especially to greater understanding of the burden of disease. “As a foreman, I want to get people out of their isolation. Many people with this skin condition hide, they are ashamed. I have struggled with it, but I explained to those around me what the skin condition entailed and referred me to Michael Jackson, who also had vitiligo. The penny dropped promptly. I have to be honest, it took some time to swallow and get used to. I no longer have any problems with my vitiligo, other than having to watch out for sunburn, so sensible sunbathing is recommended. Your body needs vitamin D, but I don't expose myself to the sun's rays for more than 15 minutes. I also regularly apply a factor 50 sunscreen.”

“In the Netherlands we have the luxury of having healthcare practitioners assist us with advice and assistance, and that is nice. But also remain involved and interactive during the treatment process. This contributes to the fact that healthcare providers will look more at the person than at the patient from the start. I think that is a must, because no patient is the same. Everyone experiences his or her vitiligo differently. Take the opportunity to discuss your situation in detail with your practitioner, as far as the conversation allows. Open communication helps patients gain more insight into their own illness and disease burden. They will better understand which treatments are proposed and will therefore be able to better adhere to agreements made.”
Monteiro points out the importance that the entire healthcare chain, the general practitioner, the dermatologist and psychological care providers, are aware of this.
'Not only for the cure, but also for the care!
This was recently also laid down in an international guideline for vitiligo, which focuses on shared decision making, jointly developing a treatment plan with the healthcare provider, and the disease burden of vitiligo. “This also captures the importance of good mutual communication.”

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