A study reveals (finally) how young people perceive their vitiligo

A study reveals (finally) how young people perceive their vitiligo

How do young people perceive their vitiligo, this autoimmune disease that depigments the skin? A first study on the subject now allows us to know the psychological impact of this illness, although it is benign, and the views of their loved ones.

Still too little known among the population, or considered surprising, vitiligo, an autoimmune disease which depigments the skin, nevertheless impacts a million French people. But given its apparent side (white spots that develop on the skin) we could wonder what the psychological impact of this disease is, particularly on young people who experience it on a daily basis. This is the subject of a new study by Incyte Biosciences Europe, the French Vitiligo Association and the Baltasar firm, conducted by the IFOP and published yesterday, March 11, 2024.

A disease that is too little known and stigmatizing in middle school

The study was conducted with 12 people with vitiligo and 1,000 respondents to various questions on the subject. And the first learning is that only 30% of young people today know about vitiligo, while 51% say they have heard of it. The most informed are young women (19-25 years old, around 60%), and the least informed are college students (34%). In fact, now that we are in 2024, 31% of young people who encountered a person with vitiligo were afraid that the person was contagious.

Therefore, vitiligo seems to have a greater impact on affected young college students. Less informed and less tolerant, 34% of college students would agree to be in “physical contact” with a person suffering from the disease.

The teasing and harassment would also be much stronger at this period of life and can overlap with already existing school harassment. Difficult sentences such as “Ah, but it’s weird, I hope it’s not contagious,” are regularly reported.

Raising awareness among young audiences and the medical sphere seems necessary

While one in 5 young people experiencing vitiligo would have witnessed a situation of stigmatization, 76% of young people surveyed believe that society’s view of people with vitiligo is harmful to their mental health, and 82% of respondents consider it essential or important to raise awareness of vitiligo.

But preserving mental health must also become a point to work with medical teams, reports the document. Young patients thus highlight the need to also better inform the medical profession and those around them whose reaction has an effect on mental health to avoid recurring and tiring questions, and prevent the affected person from having to continually explain their condition.

Speaking more freely helps you cope better with vitiligo

Acceptance of the illness seems to be a key to moving beyond the stigma. But on this point, the study notes a difference between the spots on the body and those that could appear on the face in the future, which remains a deep concern among the subjects, and among their parents.

Despite everything, according to the study, young patients who accept their vitiligo are also those who manage to talk about it, with a therapist and with those around them. This acceptance of the illness also results in different strategies, notably claiming one’s illness to reverse the stigma. Thus, according to the testimony of one of the patients interviewed:

“It’s more by hiding it that we’re going to get teased, than by putting it forward and assuming it. When we assume something, people can no longer attack too much. So instead, make it a strength and accept”.