The story of Anjali
My name is Anjali Vyas and I am living with an invisible and rare disease, Multiple Sclerosis (MS). Its been 8 years that I am fighting MS. I am a Chemical Engineer by qualification and an IELTS Trainer by profession. I was 21, when I had my first experience of optic neuritis (loss of vision) which later confirmed me with the autoimmune disease, Multiple Sclerosis.
It was a tongue twister for me and a jargon to my family. It took me 3 weeks to get my vision back. We were shocked & devastated as my Neurologist and Google told us that it’s rare and incurable. After a year, when I started working as a Product Development Executive, things were shaping up well. But soon after, I had another episode of vision loss due to MS. It was that time, when my reports and the challenging symptoms of MS, made me change my career. While I was again on bed rest, I decided to understand Multiple Sclerosis and its prevalence in India. During my research, I came across stories where young men and women, most in the prime of their lives surrendered to MS as they couldn’t afford the hefty treatment. I could feel the pain, as even I was financially dependent on my father for my treatment. He used all his savings for my weekly injection, that costed me Rs. 30,000 (approximately $400) a month. This pushed me even more and I wrote to the Prime Minister of India and filed RTIs asking for affordable treatment for MS in India. Self Advocacy since then, enabled me to fight for the rights of persons with MS. I joined the MS Society of India (MSSI), served as the Joint Secretary (Hon.) of MS Society’s Pune Chapter for 2 years, represented MSSI at National & International platforms and became a part of the cross disability network. Its been 6 years that I have been advocating and creating awareness on the rare disease, Multiple Sclerosis among people, health care workers, disability organisations and the government officials. Due to low awareness and no national data; access to affordable treatment, inclusive health policies and employment have become the major challenges for persons with MS in India.
As the India MS Person of the year 2021 and also a Javed Abidi Fellow at the National Centre for Promotion of Employment for Disabled People (NCPEDP), I now wish to work on empowerment and employment of persons with rare and Invisible disabilities in India. With each passing day, it has made me truly believe that MS is a blessing in disguise!