Vitiligo: “I was called a chimpanzee by my ex-partner”

“It started with the appearance of a small depigmented area above the eyebrow. As it appeared in summer, I had a mega sunburn on it at the time which caused me a lot of pain. “.

“My vitiligo emerged during a separation”

Thirty years ago, Jean-Marie developed vitiligo, an autoimmune disease that causes skin discoloration and sometimes other comorbidities such as hypothyroidism or rheumatoid arthritis. “For me, the pathology develops in successive outbreaks and not necessarily on areas subject to friction. Today, I am almost 60% depigmented, particularly on the face, hands, forearms and sternum” , describes Jean-Marie. As with many patients, his pathology was triggered following a stressful event. “It can be a pregnancy, a move, a death, a dismissal… For my part, my vitiligo emerged in the context of a separation”, he continues.

Although certain treatments exist today, none have been effective in the long term for this retired HR manager who no longer even uses self-tanners. Enough to cause a real physical difference which is not always easy to manage on a daily basis. “I sought psychological help some time after the onset of the illness, because as I held a position of representation and contacts, many people looked intently at my hands and my face during the first meetings or during professional meetings , which could be really annoying”testifies Jean-Marie. “It still happens to me today when I go shopping for example, which constantly reminds me of my illness. Like many children and adults with vitiligo, I was even called a chimpanzee by my ex- joint because of the discoloration I have around my eyes”, he laments.

“Men generally talk much less about vitiligo than women”

Still regarding the physical difference, do women experience vitiligo in the same way as men? “I think not, because men generally talk about it much less than women and perhaps pay a little less attention to their appearance (which does not mean that they do not notice the illness in front of the mirror) For their part, women have many more possibilities to make their depigmentation disappear thanks to makeup and express themselves more easily about the disease.analyzes Jean-Marie.

Today, Jean-Marie is better able to verbalize his pathology and impatiently awaits the arrival of new treatments, such as the new Opzelura cream (ruxolitinib) recently validated by the European Commission. He is also involved in a patient association of which he is vice-president. “As it is difficult for me to remain inactive, this has allowed me to better understand my illness and to know the medications available. And then it also allows me to help other patients, because there is really a lot of suffering generated around vitiligo. Some people are fired because of it, experience depression and sometimes even attempt suicide. The psychological impacts of this condition are underestimated and sometimes require professional monitoring.” he regrets.

“Moreover, doctors must stop telling people with vitiligo “that there is nothing to do” and become more informed about existing international recommendations for the management of this disease”he adds.

In Europe, 1% of the population suffers from vitiligo

Some things are still moving in the right direction, such as the fact that certain personalities such as former Prime Minister Edouard Philippe have recently spoken publicly to discuss their problems. “This is an excellent thing. This first makes vitiligo more visible and shows that anyone can get it. “It also gives some insight into what it can be like to live with this disease.” welcomes Jean-Marie. “When he was at Matignon, I was able to publish a column in Le Parisien to ask that the political staff of the National Assembly stop treating Edouard Philippe as a Norman cow, a Dalmatian or a panda”, he recalls.

In Europe, it is estimated that 1% of the population suffers from vitiligo, a prevalence which increases to 8.8% in some countries such as India. This disease is generally more visible in summer than in winter, because the contrast between normal skin and depigmented areas is accentuated by tanning. Finally, let us point out that, contrary to what we often hear, the development of vitiligo is not linked to being mixed race.