30-year-old Ramya from Chennai is a model, motivational speaker and an aspiring filmmaker. From her photographs on Facebook, she emerges as a confident young woman who loves to experiment with clothes and different styles. But Ramya was not always so self-assured.
She recalls a time when she was bullied by her schoolmates and teachers, to the extent that she was once asked to step off the stage when she’d gone to collect a prize that she’d won. Ramya has vitiligo, a condition which causes loss of skin pigmentation in patches.
Although it is not a condition that is contagious, people with vitiligo often face ostracism from those around them, including family and friends.
What is vitiligo?
Speaking to TNM, Dr Deepti Ghia, a Mumbai-based dermatologist and trichologist who works with Jaslok Hospital and is part of the Global Vitiligo Foundation, says, “The causes can be multiple. The topmost cause is autoimmune. Your own immunity works against the colour cells, the melanocytes. There are many autoimmune conditions like autoimmune thyroid, autoimmune diabetes and so on.”
An autoimmune condition or disease is one where the immune system begins to attack its own cells. This is triggered by certain factors which cause the immune system to view its own cells as foreign pathogens. While the reasons for this trigger are unknown in vitiligo, the end result is that the immune system of an individual begins to attack the melanocytes of the person. Melanocytes are cells which form the pigment melanin, that gives someone their skin colour. When the melanocytes are attacked by the body’s immune system, it results in the discolouration and patches that are seen on the skin of someone with vitiligo.
“You start having localised patches of loss of colour. It can be very active, unstable and rapidly increasing. Or it can stabilise and remain the same for years. There are different stages of the condition also,” Dr Deepti says.
The condition is not life-threatening.
Living with vitiligo
For Ramya, the lack of awareness about vitiligo meant a lonely childhood, with no support from her immediate circle. “I was always treated differently. I never understood it till I grew up,” she says.
When she was less than five years old, Ramya’s skin would react adversely when she consumed any non-vegetarian food. She was taken to a doctor who over-medicated her, a reason she believes worsened the condition and made the discolouration spread rapidly.
“I got my first patch in my left eye. After that, all of a sudden, it spread all over my body. I was taken to different hospitals and subjected to all kinds of treatment. I went all around the country, trying out Ayurveda, Unani, Siddha, Allopathy and what not. Everything would work for some time and then stop. The patches would start vanishing but appear in a different place,” she says.
Ramya has a younger sister and her father was already unhappy that his wife had given birth to two girls. When Ramya’s condition became known, he used it as an excuse to leave the family for another woman. Ramya also remembers how parents in the school where she studied would tell their children not to make friends with her.
Image courtesy: Ramya/Facebook
“They were afraid that it was contagious. I didn’t know how to make them understand; nobody told me how to do so,” she says.
27-year-old Ragul Karthick from Pondicherry, who also has vitiligo, works as a team leader in a bank.
“I was 10 when the discolouration was first noticed. When we went to the doctor, we were told it’s themal (white spots) and sent away. I was around 16 when it was diagnosed correctly,” he says.
Ragul says that at the time, nobody knew what vitiligo was and he was ostracised as a result.
“Nobody would want to be with me. They wouldn’t even speak to me. They’d leave me behind wherever they went. But my family was supportive, especially my mom. They tried out many treatments for me but nothing worked and I said I’d had enough,” he says.
Finding employment was also difficult and it took him a while to get a job where he would be accepted.
29-year-old Sushmita Jain, who is based in Bengaluru and works for an NGO, has vitiligo too and remembers visiting endless hospitals as a child.
“I was around 9 to 10 years old when I was diagnosed. I got a patch under my eye and it started spreading extensively on my face, hands and legs. We tried many treatments. Then, with a treatment called narrow band UVB, also called phototherapy, 50% of my patches were healed. My face, hands and legs have no patches now. Only the bony areas – like fingers and feet – have it,” she says.
Beyond this, no other treatment including skin grafting, melanocyte transplanting and punch grafting helped her much.
In Ramya’s case, however, the phototherapy backfired. She was exposed to a very high dose which resulted in her haemoglobin levels dropping dangerously.
“I took this treatment for almost two years. My hands and legs started turning completely black. I went to consult another doctor and he said that the high exposure to the UV light was the reason why I was falling sick. This was before 2012 and there wasn’t much awareness about vitiligo,” she says.
Finding acceptance
After going through a terrible time in school, Ramya found acceptance when she stepped into college.
“I realised that the more I felt bad about myself, the more the taunting happened. Instead of trying to tell people not to humiliate me, I decided to change myself. I started dressing differently. I studied VisCom, a course where people are creative and don’t think about things the way the rest of the world does. They were appreciative of my difference. I stopped being a churidhar girl, started wearing skirts, tops and T-shirts,” smiles Ramya.
She shaved off her hair and wore a cap to experiment with her look, earning the popular nickname ‘Cappy’ in college.
Dating when one has vitiligo can be difficult, especially when the discolouration is on the face. Ramya talks about how, during her college days, she would get to know men online, but when it materialised into dates in real life they would completely distance themselves.
“I did have a relationship for about four years. He was a Muslim and I’m a Christian, so that was an issue for his mom apart from how I look. I felt really bad when it ended and it took me a long time to get over the break-up,” she says.
Ragul’s first girlfriend broke up with him because of vitiligo, he shares, and till the age of 22, he struggled to accept his condition.
“It was only after that that I came to terms with it. In the starting stage, I had a lot of discolouration on my face and even I used to get scared looking at myself in the mirror. But then, I realised that nothing much could be done about it,” he says.
Ragul remembers sending a friend request to a girl on Facebook around that time. She reprimanded him for doing so but seven years later, she added him on the social media platform by herself.
“She told me that she has been reading the posts I write about vitiligo on my Facebook, Instagram and so on. I write on these social media platforms to create awareness and motivate other people,” he says.
Image courtesy: Ragul Karthick/Facebook
“I felt there wasn’t enough awareness about this. That’s why I started working on a video called ‘Support Vitiligo’,” she says, recounting how several people volunteered to help her out.
The video, which took three years to make, was picked up online by different platforms and garnered 7 lakh views in just a week. Sushmita says that it’s natural for people with vitiligo to be offended by the never-ending questions, but that she takes an effort to address people’s curiosity.
“When I started explaining to people, I realised that the awareness spread. Slowly people stopped asking me questions. My YouTube channel, Support Vitiligo, has more than 4,000 subscribers. There are doctor volunteers who answer the questions that people ask across platforms. I conduct webinars for children in rural areas, do direct awareness sessions too,” she says.
Sushmita’s initiatives include sharing empowering stories of people living with vitiligo to inspire others with the condition. She met her husband Pradeep in September 2016. It was an arranged marriage.
“I’ve been through many arranged marriage proposals. My husband doesn’t have vitiligo. He’s a very open-minded person,” she says. Though she’s faced rejections, Sushmita is not bitter about the past. “I understand why people think so much while choosing a life partner. They have a right to say no and so do I. By the time I met my husband, I had reached a stage when I felt marriage was good but it was not everything,” she says.
Image courtesy: SushAmita Pradeep Jain/Facebook
“The gold standard for treatment for vitiligo is narrow band UVB and it’s more than 70% effective,” says Dr Deepti. There are different forms of light therapy and it involves using light of specific wavelengths to stimulate melanin production.
Dr Deepti says that there are also topical creams and steroids available. These drugs help by reducing the local immunity and making the colour return to the patch of skin.
“When the patches are spreading rapidly, oral steroids and immuno-suppressants can be given. All of them have been studied with literature, case control studies and there’s good evidence that it works. The challenge of treating vitiligo with these medicines is when you want to address the adverse effects also. Per se vitiligo is not a life-threatening condition. Your medicines should not create more side-effects in the patients than benefits. That’s where the key role of the doctor comes in,” she says.
There are also surgical procedures available like autologous melanocyte transplantation, which can cost anywhere between Rs 15,000 to a lakh, depending on the sensitivity of the area where the procedure needs to be carried out. The success rate is about 65%.
“The patients have to give the right history. Their vitiligo should have become stable. Sometimes they’re so desperate to do something that even if they’re getting new patches they might say they’re stable. Then the results are not so good. There’s also an 8% chance of complete failure,” she says.
Some cities do have support groups for vitiligo patients in India and the Shweta Association in Pune even has a matrimonial service for them.
Although many patients who have vitiligo do not have parents who have the condition, Dr Deepti says, "Medically, I feel if two vitiligo patients get married, the chance of their child having vitiligo is higher. But socially, they do want a partner who can understand them. One can’t say that someone with vitiligo should only marry another person who has it. There is no one correct view about it."
SupportVitiligo has a support network on Telegram where people with vitiligo can connect and share their emotions, treatments, lifestyle habits etc. Telegram - +91 9845668296. Website: www.supportvitiligo.org