Our Journey with Vitiligo
  Nerissa Hosein
Parenting and Child Care
June 2022

At the tender age of eight, my beautiful, brilliant and outgoing son was diagnosed with vitiligo. It was a hard pill to swallow for such a young child. Listening to the doctors and specialists use words such as ‘progressive’, ‘no cure’ and ‘long term’ was scary for our family. It was a turning point for sure in our lives.

It’s been six years since that day. My son’s skin has changed significantly. As a family we keep doing our research and trying new treatments, but not much progress has been made by us or globally. We have been to many specialists in the country, tried different ointments and creams, bought a UV light machine and started light therapy. The spots have still spread though, so we have had to educate our son and our family to understand what exactly is happening and to know that vitiligo is not the end of anything.

                            A handheld UV light machine

 

So what is vitiligo? Vitiligo is a skin condition where the skin slowly and gradually loses its pigment and turns white. It may be due to an autoimmune disorder, and it occurs when cells that produce melanin die or stop functioning. The fact that his dad and I both have other autoimmune diseases in our family history would have played a part in his condition. It’s rare for a child to get vitiligo, but it can happen. There is no real reason why it starts and there is no known cure. It can be found mostly on the arms, legs and face but can also come out on any other part of the body. It can also cause hair to turn white. 

We have all seen someone with this condition walking down the street or in the supermarket or sitting next to us in a taxi. We have all looked twice because it is noticeable. Imagine what you would feel like if it were you that people looked at. And imagine if you were just a child.

As a parent I would like to make more people aware of vitiligo. For starters, it is not contagious so you can’t get it by talking to him or sitting next to him.  It is mostly a cosmetic disease. Thankfully he is not in pain. He is however aware that he looks different. At fourteen, he is now in secondary school and he has adjusted well, but I still worry. Kids these days can be very mean and arrogant.  I would like people to acknowledge him for his brilliance and his wit. Vitiligo does not and will not control his life. We have had several talks with him. The good news is that vitiligo is not painful. It will not affect his health, besides the fact that his skin will be more sensitive as time goes by. He can live a full, normal life in spite of the disease. 

Photos showing the changes in my son's skin: the top photo was taken in 2022 and the bottom one in 2019

 

As time and this condition progresses, he may run the risk of his skin being extremely sensitive to the sun and skin cancer. But that’s something in the future that we will face together as a family.  For now, we are focused on keeping him confident and loved through it all. The world is vain. We all know this. We all go to the hairdressers, the makeup stores, the gym and buy the best clothes we can afford to look good. We may say that looks don’t matter but we all know that society does not feel that way. We cover up blemishes and hide when we get sunburn. We shun people who are different every day. So how do you help a young man feel comfortable in his skin, when his skin is literally changing and society is banging down the door telling him he’s different?

As his parents we will protect him and our best bet is to educate those around him to let them know that he is the same fun, smart and loving boy that he has always been. We have to support him as a family and as he goes through adolescence, we have to make sure that he feels safe and loved.

Vitiligo came into our family, but it will not control us. It is not something to be afraid of and it is not anything that will define us. As a family, we remain positive and hopeful that a cure for this disease will be found. Research is continuing daily and we are hopeful that someday soon, there will be an end to it.

So the next time you see people with white patches walking down the road or sitting next to you, I implore you not to stare or move away. Do not watch them out of the corner of your eye or snicker at them.  Chances are that someone else may have already done that. Instead, say “Hi” and smile and know that there is nothing wrong with them. They are not lepers or criminals. They are just normal, everyday people that have a skin condition.  Trust me, they will appreciate your kindness. 

 

 

By: Nerissa Hosein | Parenting and Child Care | June 2022


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