Visual misconception is a term I have coined to illustrate my experience as an individual with vitiligo. I come in contact with people of all ages and from all walks of life, whether it is at airports, supermarkets and restaurants or even on the beach in the Caribbean. Ninety-nine percent of the times their reaction to my depigmentation is always one of uncertainty and initially they try to avoid any contact with me in the event it is contagious, hence my coined expression.
I have chosen to write this article in the hope that readers would be more knowledgeable and aware of the disorder and the effects vitiligo has on most sufferers. I do not consider myself a sufferer, not even in the initial stage when my hands began to change drastically. I was curious to find out why I was the only one in my family with this disease. I discovered that I was not the only one affected by it and that I have a maternal cousin who also has vitiligo. I concluded that it is a genetic predisposition in my family.
I was born in the Land of Many Waters, Guyana and lived most of my life in my homeland. My vitiligo surfaced in 2005, three years after I moved to live in Dublin, Ireland. It started out as tiny pecks between my fingers and toes and soon began to spread rapidly, just around the same time I was diagnosed with hypothyroidism. Sometimes in quiet moments, I often ponder, if maybe, the lack of sunshine and cold weather contributed to the rapid progression of this disease.
I must admit, it did knock my self-esteem for a while because of the way people stared at me. I became so conscious of my depigmentation that I welcomed the winter months when I could wear gloves and boots to cover my hands and feet. However, instead of wallowing in misery I began researching to learn more about the disease, its causes and effects.
For those who might not have heard of vitiligo, let me briefly explain. According to the British Journal of Medical Practitioners, vitiligo is one of the commonest skin disorders with a presumed autoimmune aetiology. It causes one to lose the pigment/melanin in the skin.
Facts:
- One to two percent of the world’s population suffers from this disease.
- It affects all ethnic, socio-economic and racial groups equally; however, it is much more visible in persons of darker complexion.
- Vitiligo is characterised by the destruction of melanocytes pigment cells that stop functioning, which causes the skin that is affected to become white in colour.
- There is no cure to the best of my knowledge, however, to date, researchers of large corporations continue to search for ways to reverse the depigmentation. In a recent medical journal it provided some hope that there are medicines existing in Brazil and Cuba that can tackle the progression, and even treatment to improve the appearance of the skin.
- Hypothyroidism is linked to vitiligo, they are both autoimmune diseases.
- Vitiligo can be hereditary, however not all vitiligo sufferers have hypothyroidism.
According to Vitiligo Support International, half of the people with vitiligo have had the disorder before they reached their 21st birthday and 95% before the age of 40. I am an exception to this norm. My vitiligo developed in my mid-forties. Instead of spending thousands of dollars and frequent visits to many dermatologists, I opted to take extra care of my skin ensuring that I apply SPF 50 sunblock to my hands and feet before venturing out to prevent burning and overexposure to the sun.
I have also chosen to advocate for vitiligo sufferers. My first approach was to seek simple ways to explain my “skin change” to many, especially children who are the only ones bold enough to ask questions like, “what happened to your hands? Does it hurt?” I tell them the story of the butterfly-shaped gland that is malfunctioning, pointing to my thyroid gland and even their parents are intrigued by my explanation.
There are several support websites and advocates scattered worldwide to support those who experience stigma and discrimination because of their skin disorder. However, on the other side of the coin, I have observed that many young people with vitiligo are coming to terms with their skin disorder and even capitalising on the fact that they look “different”. Recently a vitiligo sufferer participated in America’s Top Model and although her depigmentation was quite visible, she never tried to camouflage her “white” patches. Hopefully, her appearance helped to create some positive impact on her generation of young vitiligo sufferers.
There are products used by many vitiligo sufferers to camouflage the depigmentation. They include Vicey Dermablend, La Roche-Posay Toleriane, Colour Tration and Natural FX Water-based liquid foundations. But these are all temporary solutions.
The famous King of Pop, Michael Jackson was among the sufferers of vitiligo. It was confirmed in his autopsy. Among other celebrities affected by the condition are Holly Marie Combs from Charmed, famous actors Dudley Moore, Steve Martin and Jon Hamm of Mad Men.
As for me, whenever I encounter other vitiligo sufferers, I acknowledge their presence with a nod and a smile. Their responses are always positive. As for those sceptics, I smile and say in a most reassuring way “it’s not contagious.”
