My 20 Year Long Journey with Alopecia Universalis

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Trigger Warning: This article contains references to suicide, mental disorders and depression. 

Alopecia areata is a condition in which hair is lost in either some or all areas of the body. It is an autoimmune disease where the body fails to recognise its own cells and subsequently destroys the hair follicle. The disease commonly revolves around hair loss on the scalp, but in rare cases it can develop into alopecia areata universalis, which is loss of all body hair. The disease can be a cause of psychological stress and often causes social phobia, anxiety and depression due to the drastic change in appearance. Unfortunately, there is no cure for alopecia as yet.

Read on to see how one young woman has dealt with alopecia her whole life.

I was only five years old when I became a victim of alopecia. As a kid, I used to work really hard to come first in the class; I didn’t even know what I was suffering from. I was initially diagnosed with typhoid and after treatment, a round, bald patch appeared on my head right behind my hairline. For four years, I went through topical and homeopathic treatments but they were all in vain. That little bald patch had been triggered and grew to both the left and right sides of my head. I was in 1st grade trying to give my all to my final exams, but all of a sudden my appearance changed and I was uncomfortable going to school since my friends started avoiding me. And it remained the same for the next four years. For those four years, I was fighting a disease, bullying and exam phobia.

I really wanted to quit my studies but one of the dermatologists I visited kept my spirits high. I was given my first steroid injection right in the scalp. Yet, I still covered my hair with a scarf in school and at home. I became hesitant in meeting relatives and guests at home and every night was a struggle in coming to terms with my hair loss. My ‘friends’ used to pull my scarf off and that lowered my self-esteem. My parents and teachers didn’t know how to deal with me anymore – they didn’t have any awareness of the disease. I somehow mustered up the courage to continue my education. But every Eid was an unforgettable tale of heartbreak. Every year, there was a hope of progression, but unfortunately my disease was triggered to alopecia universalis. Continuous struggle, societal pressure, interrogation, bullying, hopelessness and a lowered self-esteem were all bottled up inside me and this became the reason behind my first suicide attempt. It left a worsened effect on me.

I was left with no will to face deal with the alopecia anymore. I used to get heavily fined for covering my head at high school and I never wanted to go but my mom – unaware of all this – would still send me. The sleepless nights and nightmares began haunting me. I became unable to even talk and got tuberculosis (TB). I had tried to commit suicide seven times.

After a year’s gap and ongoing treatments, I pursued my graduation. The past few years had been full of more suicide attempts, TB, mental disorders and continuous struggle. But there was a new passion invoked in me. I decided to pursue my education as far as I can and not give up because of what society thinks of my appearance. I finally completed my education, even if it alongside a lot of panic attacks and depression.

I kept on going, trying out all kinds of treatments, including PRP. But it was all a waste of money. I was even offered a surgery, but it was life threatening and I didn’t go for it. In 2017, after 18 years of struggle, the doctors told me there was no cure for my disease. And I couldn’t control myself; my eyes were unable to lift the load and tears started rolling down my cheeks. My heart started to sink; this was a burden I had been carrying since childhood. I became full of negative thoughts. “What was even left to live for?” I was in a lot of pain that can’t be expressed.

But I decided to make a choice. I won’t think of the negativity and instead focus on saving others from such pain. I promised myself to make the lives of other victims a little easier. I’m still looking platforms to raise awareness and further my career. And I may not have any opportunities right now, but one day I will!

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