RamG was lucky. There are roughly 7,000 recorded rare diseases prevailing in India. Not many treatments are available.
A motivational speaker, best-selling author, science editor, life coach and co-founder of a startup - at the age of 48, RamG Vallath is donning many hats. His undeniable enthusiasm and positive approach towards life has kept his spirits high on its bumpy road. RamG, at the age of 34, was the youngest ever operations head for Airtel, one of the biggest telecom giants in India. With a dream of becoming the global CEO of a Fortune 500 company by the age of 45, he was striving hard to make his dreams come true. But life started taking a different turn when a rare condition struck him.
A rare auto-immune disease and the struggles in his words….
“My hands used to shake; I was unable to hold my plate or glass. I was in a top position on the corporate ladder, but making it up the stairs for a meeting in the boardroom had suddenly become a challenge. The doctors said it was stress, but I worked my way out by walking, working out and practicing yoga to help my body beat that stress. I thought that I would eventually get better. As months passed, I suffered from a fever that worsened the condition, and even mundane tasks like walking and buttoning my shirt become very difficult. At 40, I was crippled, and the diagnosis of CIDP (Chronic Inflammatory Demyelinating Polyradiculoneuropathy), a rare auto-immune disease, brought my life to a standstill,” recalls RamG.
According to the Organization For Rare Disease India (ORDI), while there is no definite definition, a disease occurring infrequently in a population can be termed a rare disease.
Unfortunately, most of them are not curable, and the cost of treatment is very high. To manage his condition, RamG had to take IVIG (Intravenous Immunoglobulin), and one round of these drugs cost him Rs 6 lakh. Surprisingly, the condition reverted back in 45 days’ time, and he was left with no option but to use steroids. The use of steroids weakened his body and further deterred his immune system.
A clinical trial in the US came as a ray of hope for him
At that time, there was a clinical trial going on in the US related to CIDP, and he decided to be a part of it. This came as a new lease of life for him. His immune system was renewed with this trial, and he started getting better. During his recovery period, he wrote a book, Oops The Mighty Gurgle, a subtle and humorous sci-fi novel. As he was unable to type it out, he made use of a speech recognition writing software.
“During the trial, they pumped me full of chemo and other interesting concoctions such as rat and rabbit extracts. My next challenge was to regain my lost muscles and to get back on my feet. While undergoing the treatment, I used to walk in the corridor of the hospital with the stand attached with several bottles pumping medicines into my body. Slowly, I picked up, and it became an hour at the gym. I set workout targets for myself and would beat them every day. It was lots of hard work and a positive mind that helped me survive this phase and reinvent my life,” says RamG.
He believes in “turning every downturn into success in life”, and aspires to touch a million lives positively through his books and talks. He is also working to bring the treatment to India so that many can benefit.
In battle against rare diseases
RamG was lucky, as not many treatments are available to cure autoimmune diseases and there are roughly 7,000 recorded rare diseases prevailing in India. It takes an average of seven years to diagnose a rare condition. Three elements are used across the world to infer whether a disease is rare:
- The total number of people having the disease
- Its prevalence
- Non-availability of treatment for the disorder
To support and raise awareness, ORDI (Organization for Rare Disease India) is organising Race for 7, a marathon on 27 February at St. Joseph's Boys' High School, Bengaluru from 6:30 a.m. onwards. Race for 7 and support the cause.
Founder of ORDI and parent of a child suffering from a rare disease Prasanna Shirol says, “We are conducting Race for 7 with an aim to create mass awareness and promote research in the area. The theme for this year is ‘With Research, Unlimited Possibilities’.”
ORDI is a non-profit organisation in Bengaluru working towards empowering patients with rare diseases and their families in India with access to national and international resources to improve their quality of life.