I was born with alopecia areata, an incurable disease that causes hair loss. This is my story

Meet Saumya, a 19-year-old girl from Hyderabad who has been living with alopecia areata. This is her story of accepting herself and being confident in her own skin.

Alopecia areata
For Saumya, it’s all about loving herself. Image courtesy: Saumya Modi
Reader Submission Published on: 18 September 2020, 19:33 pm IST
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I am Saumya Modi and was born with alopecia areata. It wasn’t something that developed over some time—I have always lived with this disease. During my growing years, my hair came out in a haphazard pattern. I had multiple bald patches, which confused my parents and instigated them to go see a doctor about it. And so, just a few months, after my birth, I was diagnosed 

Initially, they were in denial about this problem and just shaved my head, hoping that a fresh set of hair will grow. The shaving didn’t yield any results, which led to the diagnosis of Alopecia Areata. I was barely a few months old at that time. 

Growing up in a society, looking different
While the hair only became sparse with age, my parents were quite uncomfortable with it, for no one we knew had had this disease. We just learned to live with it.

Trying to understand my disease to try to treat it
I wasn’t well aware of this condition in the beginning. I came to know its name much later in life. Every single doctor we went to suggested a different remedy. Most of them recommended home remedies such as paste of herbal leaves. I also tried some supplements like vitamins like B12 and D.

My disease was a rare one, with no solution in sight
There isn’t a lot of research on how or why a condition like alopecia areata occurs. But it is something that I know I will have for life. Doctors say it’s genetic but they don’t know how the genes mutate for this to happen and thus no-one knows how exactly to stop it. 

The doctors have their speculations. For instance: “Your hair will grow if you have more calcium and drink more milk.” I did try a lot of things that were recommended to me but none of them worked. No one thing will either increase or decrease my hair fall. And so I simply accepted it.

Learning to live with alopecia areata
One incident that I recall very clearly is from class eight, when I went on a summer program to Indonesia with a few other students I didn’t know very well. On the first day of the stay, we had to elect a camp leader amongst us and I lost to someone else. I still remember that it was because the other kids didn’t like my appearance and thought that I looked different. But I didn’t blame them, because I am different from them. After all, it’s not very often you see a girl who is bald and confident about it.

Rebuilding my confidence and a support system
You might be surprised by my outlook as you would assume that a condition like alopecia would have affected my confidence especially during teenage years when body image tends to be an issue. But honestly, it never really impacted me much.

I am extremely confident about myself, especially my body. The one thing I strive for is to stand out from the crowd. So, if anything, it makes me happy that there is something about me that’s different from others. 

Also, read: What are your chances of hair loss? Take this quiz to find out

But I did learn a few lessons along the way…
Before I went to college my parents asked me if I wanted to wear a wig. I said yes, I would want to try it. But I decided that I would first attend college as I am and only once I had settled in and made friends, that I would start wearing a wig. I wanted to create awareness and not hide my condition. 

I wore a wig to college from October 2019 to March 2020, which is when I came back home due to the lockdown. Since then there have been days when I wear it and days I don’t, it depends on what I feel like. I consider my wig an accessory, like a jacket. 

I worked with a company that manufactures wigs and I got a lot of comments that said, “You tell people to be yourself and love yourself but you are changing yourself by wearing a wig”. 

So I would just like to say that changing your appearance is not changing who you are, and doing something that makes you happy while also loving yourself is nothing bad. You can change things about yourself but still love those things. 

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