Shriyansh Srivastava who has been diagnosed with FSHD sends in this article
I’m Shriyansh Srivastava, a 25-year-old student diagnosed with FACIOSCAPULOHUMERAL MUSCULAR DYSTROPHY (FSHD). It is a rare disease, a type of Muscular Dystrophy wherein the person progressively loses muscles with time. There is no cure for this diagnosis currently and there are only supportive and management therapy of supplements and mild exercise. There is a lack of awareness, and it is often misdiagnosed by the doctors (not their fault, the diagnosis is tricky).
A little background Story
My diagnosis took 11 years (2005 – 2016). These years were a constant period of efforts put in by my parents and everyone who wished for my well-being. We went to every single doctor ranging from Allopathic, Homeopathic, Ayurvedic, Alternative Medicine, etc. but always returned empty-handed.
Accupunture therapy by a very humble doctor, Dr. Jagjeet Singh, brought me relief.
Ever since the diagnosis started to manifest itself, I started to lose out on my understanding of what is really happening to me?
As a kid, I was proactive in every sport that school had to offer. I used to cycle 15+ kms, and did yoga but as time passed by, it became troubling for my parents and me to see that it was becoming difficult to run, walk, or even stand straight. What followed was a long dark period of mental and physical health trauma for me. The worst part for me was that I couldn’t even speak or tell about it to people around what was happening to me, as I didn’t know it myself. People used to mock me, bully me, laugh when I fell down and it all added up to the existing trauma and insecurities. School wasn’t a happy place for me.
In the midst of all this, I took up a promise, (as an escape route for a kid’s mind) that I will work to find a cure for whatever the condition is. I wanted to become a Doctor and Biology always intrigued me. It was the only thing that kept my hopes alive. I took a break after school for medical coaching but didn’t make it through. Life had plans for me, so I ended up pursuing B.Pharm (Hons.) Batch 2015-2019, at BITS PILANI, PILANI CAMPUS.
The hope of working towards a solution was kept alive.
It was 26th January 2016, and on that day at my college I felt severe weakness in my legs and couldn’t stand. I was terrified at the mere thought of ending up in a wheelchair. I presumed, as the society portrayed it, the life on a wheelchair was useless. I was given some steroid injections as emergency and I somewhat recovered. Following week I came back to Lucknow and finally got my diagnosis at SGPGI. The symptoms manifested better this time so we got a diagnosis. It was FSHD.
My family was traumatized. What followed was that darkest period that I had experienced till date. 2016 – 2019 caused trauma and triggers at another level. I went onto being suicidal, depressed, broken and took shelter in alcohol and cigarettes. (2016-17 are the two years that are blacked out in my memory). With all this, my parents were stubborn enough (I’m grateful that they are) to make sure I don’t lose out on education. THE PLAN OF FINDING A CURE WAS VERY MUCH ALIVE, yet again.
With mentorship of my teachers and will of my parents, I continued to study. At the time of the final year (2018-19) of my college I started preparing for GATE & GPAT for further education. I qualified both, but in the process, the diagnosis hit yet again and this time, I lost muscles in my legs.
Recent –
As far as my condition stands, I am currently using a wheelchair (since February 2019). Having qualified exams, I approached BHU & JAMIA HAMDARD for post graduation, but they couldn’t accommodate me.
Life had other plans, so I went on qualifying NIPER for pursuing research. As I write this, I have completed my post graduation in Pharmacology and Toxicology at NIPER – R, Lucknow and have further qualified CSIR NET JRF with hopes to pursue and initiate research around FSHD in India. It has not started in India, and I’m still looking for a mentor to help start me with the research. (I’m a fan of Kalam sir’s ideology with vision of India). There is still no cure but, over time, I have researched about possibilities for management of this diagnosis. Proper nutrition helps me stabilize and work through thick and thin.
I’m still losing muscles, I still go through mental issues at times. But I know that I have to keep the promise I made to my younger self and that life has plans for me.
THE PLAN OF FINDING A CURE IS STILL ALIVE.
All that I have to do is to keep my efforts up, and keep trying. Wheelchair has brought light into my life, for now I know that I need to entirely focus on the mental work that I can put into.
I always say to my friends that ‘THIS DIAGNOSIS HAS GIVEN ME SO MUCH MORE THAN IT HAS TAKEN AWAY FROM ME’. (I just call it a DIAGNOSIS, & it is NOT a DIS-EASE nor do I SUFFER from it; this is a perspective that I carry now).
For who I am right now, I owe my life to my parents, my teachers & my brother in arms, Subham and Vedhant.
What I’ve understood about life is that – Life, always, has better plans than what we have thought for ourselves, and that we always have a choice.
Current Professional Update
Deeply invested in science, with the constant loss of muscles due TO MY DIAGNOSIS, I am shifting my research domain from wet lab to silico techniques and bioinformatics. I am not a big fan of giving up, so all I have to do is to keep trying.
I have completed my Post-Graduation at the Department of Pharmacology and Toxicology at the premier institute of NIPER-R and completed my thesis dissertation in computational aided drug designing.
Alongside the research interest, I’m pursuing a freelance job as research analysis and communications at Chronic Pain India, trying to do my part to help people with chronic pain in various illnesses/disabilities.
I’m highly engrossed in the work that I’m assigned, with all my heart and love. I have an interest in listening to good Indian music and have the highest regard for literature.
In my free time, I love to ROLL & CHILL in my wheelchair, trying my bit to normalize the SOCIAL STIGMA.
With all my heart, I dream of becoming a SOCIAL ENTREPRENEUR (aiming majorly at building start-ups to provide the necessary accessibility to wheelchair users), DISABILITY AWARENESS ACTIVIST, and a HAPPY HUMAN BEING.
All being said, I am happy to DIE TRYING for the cause I sit, head held high!
I’d be more than happy to connect and talk about everything and anything –
One can connect with me on LinkedIn
