Never stop fighting for yourself

Last Updated on 6th December 2022 by Caroline Haye

A teenager’s journey with segmental vitiligo: part 1

“The most important lesson I want you to learn from my experiences is that you are never out of options and, no matter how long the recovery might take, you should never stop fighting for yourself.”

It may surprise you to learn that these words came from a 16 year old. They sound so much older. But overcoming significant challenges early in life can do that to you. The struggle makes you wiser than your years. And, more than that, it can inspire you to help others who may be facing similar circumstances… Which is exactly why this particular teen decided to write down his story and offer (with his parents’ blessing) to share it here with the vitiligo community.

The journal and photos he sent me, charting the ups and downs of a teenager’s journey with segmental vitiligo, give an inspiring insight into his strength of character. And they also demonstrate how many vitiligo treatment options are actually available to us today… As long as we are determined to seek out the best information and the right practitioners for our individual needs.

Srao, from the San Francisco Bay area, was diagnosed with segmental vitiligo at the age of 13. The condition caused several patches of skin and hair to turn white… One on his forehead, a small one on his eyebrow and another at the back of his ear. Typically for segmental vitiligo, these patches were confined to one side of his face and head only. His mother told me “It was devastating and heart wrenching at the same time”.

How Srao’s vitiligo made him feel

Srao describes his initial feelings of shock and anxiety this way: “The things you don’t understand scare you the most and can drive you crazy. This is how I felt when I noticed the first sprouts of gray hair emerging from the left side of my head… gray hair on a 13 year old boy?

“At the time, it was nothing more than about 50 strands of gray hair which, compared to the rest of my thick black hair, was nothing. But more and more of these strands started to appear. This was a surprise, to say the least. Then, one day, it became more than just gray hairs. They had turned the skin beneath them into white patches, which was a scary sight to see for the first time. It was as if these white patches were armies of tiny soldiers conquering land. I later learned that this condition had a name. Vitiligo.

“Within an hour of my diagnosis I was in tears. Not because I had a skin condition, but because I was scared of what my friends and other people at school would think. Like most teenagers in 8th grade, I cared a lot about my appearance and about how other teenagers viewed me. This age group is probably the most judgemental one there is! So, for a long time after my condition surfaced, I went through lots of doubt and anxiety. I endured months and months of continuous mental torture over the question of what would become of me and my future.”

Srao’s first doctor’s appointments

Srao had his first doctor’s appointment just two days after finding the white spots for the first time. He recalls how it went. “When I walked into the doctor’s office I had a surge of nervousness on entering the cold room. The doctor had been talking for a while, doing various checks, when I realised I had not built up the strength to understand what she was telling me. She only offered me one single treatment option, a topical cream, that even she admitted to having no faith in.”

In a nutshell, the doctor told Srao that there was nothing that could be done for his vitiligo. And so the 13 year old had no choice at the time but to believe what he was told. He then spent the next 48 hours thinking of nothing else. But, luckily, he had a second appointment scheduled with another doctor, which gave him the opportunity of getting a second opinion, something he would highly recommend to others. “Being given the opportunity to receive a second opinion was one of the most important things to ever happen to me.”

A treatment plan

Srao fully expected to meet with the same pessimism from the second doctor as he had from the first. However, the new doctor (an ayurvedic physician) surprised him by giving him plenty of helpful information about his condition. And, best of all, after just three days, she came up with an entire treatment plan. This included a visit to a dermatologist, supplemental routines, acupuncture, phototherapy, and more.

“Little did I know that this would set me on a path of medical treatments for the next three years. At first it was quite daunting for a boy of 13 years to go up head to head against these kinds of heavy duty treatments, but as time progressed I was able to see the progress I had been making. And I came to understand that recovering from vitiligo is a gradual process. It is like a cigarette… You can smoke one cigarette to start off an addiction but it will take much more than one day without smoking to end an addiction. Although vitiligo may come overnight this guest will very likely overstay its welcome.”

Medical treatments

“My treatments became a weekly ritual. The first one was UV phototherapy (laser therapy). I went through a variety of types of phototherapy using different equipment and varying numbers of treatments per week. At first, I had laser therapy twice a week with two days break between treatments. As time progressed and the patches of gray hair and depigmented skin decreased, so the phototherapy treatments decreased to once a week. Eventually, after about two and a half years, this switched to home phototherapy, using a Daavlin Dermapal device, so I could do my treatments in the comfort of my home.

“In both settings, the doctor’s office and at home, the UV and laser treatments were simple and painless, contrary to how they might sound. At first, I half expected that a searing laser would burn a hole through my forehead! But when I sat in the chair and the doctor counted down from ‘three’ to ‘one’ I didn’t feel a thing.

“Along with weekly visits to the dermatology clinic, I had begun to use creams on all my vitiligo patches too. At first, my doctors prescribed tacrolimus and, later on, some more potent steroid creams. They explained that these were to help stop my immune system from mistakenly attacking the melanin cells. “

Nutrition

Before his diagnosis Srao had enjoyed a fairly typical teenage lifestyle. His hobbies included TV, watching movies, social activities with friends and watching or playing sports. He also loved food…

“Offer a kid a hot box of fries or a salad, and it is no doubt that most will go for the box of hot freshly made french fries. I would be lying to say I was any different as a 13 year old. From frozen yogurt to burgers to sushi, there were very few things you could give me that I would refuse to eat, except anything healthy. Some of my favourite foods were steak, fried chicken, and a delicious In-n-Out burger.”

Of course, a less than exemplary diet is not exactly unusual in a teenage boy. And it rarely has long-term health risks. But in Srao’s case, his vitiligo led him to start thinking about the kinds of junk foods he was consuming day in and day out. He admits, “Not only did I eat such foods more often than I should have, I had almost no clue about how much damage this was causing. And, to make matters worse, I drank very little water each day”… All habits that he now believes had a cumulative, destructive effect on his entire system, leaving him with sluggish digestion, weight gain and dry, flaky, sensitive skin.

“In the end, these dietary changes are probably what helped my overall health the most. Before I was diagnosed with vitiligo I had terrible bowel habits, sometimes not going to the bathroom for days. But cutting out gluten and red meat and increasing my fibre intake through green vegetables not only resolved this issue, but also brought my internal health back to normal.

“I also think that reducing sugar, dairy, and processed foods really helped to detoxify my whole system. And upping my intake of fruits and vegetables helped to purify and rejuvenate my blood and improve my digestion. Foods like beetroot and dates were a big part of my diet because they are both very good for skin pigmentation. My new dietary habits helped me get my overall health back on track and feel my best once more. And, although there is supposedly no scientifically proven correlation between vitiligo and food, nevertheless diet has become one of the most important aspects of my health today.”

Alternative therapies, supplements, surgery and more…

The therapies described here so far were not the only treatments Srao has had in the past three years in his quest to heal his vitiligo. He also used several alternative therapies, various herbal supplements and underwent a surgical procedure, with the possibility of a another still to come. In the second part of this two part article, he will talk about all of these and also share how three years of intensive therapy has changed his outlook on life. So do check out our forthcoming July 2021 blog: “Vitiligo, you won’t control me!”.

Notes:

• To preserve his privacy, I have not used Srao’s real name in this article.
• Segmental vitiligo is a less common and more localised type than non-segmental or generalised vitiligo. And, although it is largely similar, there are differences in the way the two types develop and how they may respond to various treatments.
• Srao has requested that I include an email address here for anyone who would like to get in touch with him. He is happy to answer questions and to help in any way he can. You can contact him at srao49029@gmail.com