powered by:
breast cancer canada
finding your identity with vitiligo: 'there's so much power in being vulnerable and sharing your story'
6 minute read
we apologize, but this video has failed to load.
try refreshing your browser, or
tap here to see other videos from our team.
tap here to see other videos from our team.
stay up to date on this topic
shahnawaz towheed is a mcmaster university medical student excited about starting placement as a resident. his longer-term goal is to become a psychodermatologist to help people with their skin conditions—inspired by his own experience. he knows exactly what it’s like to stand out because you look different than others.
psychodermatology is an interdisciplinary field that combines dermatology and psychiatry for a holistic approach to study and treat where “mind meets skin.” the growing specialty focuses on the bidirectional relationship between psychological factors like stress, anxiety and trauma and skin diseases.
towheed was diagnosed with vitiligo, a skin disorder where pigment-producing cells are destroyed by an overactive immune system, leaving white patches on the body. he was six years old.
“i didn’t exactly know what was really happening in terms of how to respond to it,” he says. “but that was the age when i started noticing my dark brown skin started to depigment. and that was a very gradual process from the uniform dark brown complexion i was born with to the pale complexion i have today.”
along the way, he found acceptance. his vitiligo is part of his identity. “i’m actually not doing anything now in terms of treatment,” he says of topical creams, light therapy and new drugs available.
“i would say the treatment that i have now is just acceptance. i think that’s one of the most powerful forms of treatment because ultimately, it doesn’t require you to have your skin in a certain way. it’s like, regardless of how it changes, i’ll be content with it and it took a long time to have that perspective.”
at 27, towheed is an eloquent and confident advocate, determined to create more awareness about vitiligo and treatments available. there’s no uniform response to therapy, so there’s no “fix.” treatment is about trialling different approaches, lifestyle habits and support for mental health and well-being.
advertisement
coming out from living ‘in the shadows’
not everyone has a positive story of acceptance with vitiligo, but towheed says his family and friends have always been there for him. the early teen years were the most awkward when he wasn’t certain how people would react to his appearance. he says he lived “in the shadows” for a period of time, not wanting to talk about his condition.
“ever since my skin had fully depigmented, i almost felt like i could hide it or not really talk about it at all, because some people wouldn’t really suspect it, given there isn’t that two-skin tone contrast that people characteristically have,” he explains of the pale patches that typically develop.
the condition doesn’t come with itch, sensitivity or pain, like other skin concerns, but emotional stress can be severe. where something like psoriasis can be improved to some extent in a few months, vitiligo can take years. but there is treatment and health-care providers shouldn’t discourage patients by saying that nothing can be done.
now towheed wants to leverage his story to help others get help and find a sense of community.
“there’s so much power in being vulnerable and sharing your story and how that opens the doors for other people to do the same thing and ultimately get the support that they need.”
dr. harvey lui, p
rofessor of dermatology and skin science at the university of british columbia (ubc) and director of the photomedicine institute at the vancouver coastal health research institute, says research has brought new advancements in pharmacology that could help with repigmentation of the skin.
research at ubc,
presented at the 7th vitiligo international congressin vancouver this august, identified certain cells called macrophages that will go into the skin and create abnormal reactions that then lead to the loss of pigmentation and also prevent the pigment from coming back. next steps will be changing those biomolecules to prevent reactions from happening.
advertisement
‘the other kind of research that we’ve done here in vancouver on vitiligo is that we recognize that vitiligo primarily is a condition that is highly visible. so we have been using special optical methods to try to quantify or measure the degree of vitiligo and what is actually happening down at the level of the cell when you develop vitiligo and what exactly is preventing the pigmentation from coming back,” says dr. lui.
down the pipeline, at least three effective oral medications have been studied and are coming to patients in the next few years, so he’d like to see more people seek treatment with a dermatologist to see what treatments could help. like towheed, he understands the stigma people feel because of looking different.
fear and ignorance of vitiligo
“the pigmentary system obviously is also important to us from a social, cultural point of view because it influences how we see each other and how we interact with each other. and so when patients develop problems with their pigment, then that can lead to a number of complications and medical issues, as well as social, cultural and psychological issues,” he says. with vitiligo, patients are more sensitive to sun exposure and need to be careful about sun protection.
but it’s the mental impact that concerns him most.
“i think the biggest challenge that patients face is the fact that they have a highly visible condition that others around them just don’t understand,” dr. lui says. “they face fear and ignorance. when we don’t understand something, we tend to fear it. and what people don’t understand is that this condition is not contagious. you’re not going to catch it from being near them or touching their skin. it is definitely not an infection. ”
another aspect of living with vitiligo is that people sometimes assume the person has done something wrong or that something is wrong with how they live their life and that vitiligo is the punishment. people with vitiligo have done nothing wrong.
advertisement
“they’ve been unfortunate enough to have these immune reactions that have been triggered in their body and then turn on their skin. but there is nothing to be ashamed of, there is nothing to be guilty of and there is nothing to worry about in terms of spreading vitiligo by interacting with others. so it really wears on someone because there is huge emotional distress that’s caused by this. there is anxiety, there is depression and there are cases where patients become even suicidal, which is extremely tragic and unfortunate.”
he commends patients like towheed for sharing their stories.
“they really have to work so hard to support each other and to educate the public and to advocate for understanding and access to appropriate treatments.”
finding identity along the journey
towheed wants to leave people with the understanding that vitiligo is different for everyone and “there’s no way to paint all of us in the community with the same brush,” he says.
while some people experience a lot of distress from their condition, they want to treat it and they see it as something that needs to be addressed immediately; others don’t even notice it because it’s just part of their skin.
“there’s also people who are really proud about their vitiligo and they may have, for example, social media accounts or followings in which they share their skin and their story as well. so i think it’s really beautiful to see the diversity in terms of how people appraise their condition and live with it. and i think that’s something that no matter where someone is on their journey, they should be supported for that as well.”
follow shahnawz towheed on instagram
@owheed71t1
for more of his story.
share story
