The second chance
May 20, 2016
Our guest author for International Clinical Trials Day, RamG Vallath, shares his personal journey through the clinical research process.
I was born in the state of Kerala in India. But today, I consider Chicago my second birthplace. Because it was there, in Northwestern Memorial Hospital, that I had my rebirth — a rebirth that gave me a second chance at life and eventually placed me on an orbit that is truly energizing.
Until the age of 34, my life was on a series of upswings. And although I studied in a small village public school where fewer than half the students graduated through the board exam, I had gone on to get a fantastic rank in the mind-bogglingly tough entrance exams for the Indian Institutes of Technology (IITs), the premier technological institutions in the country. After graduation and post graduate work, my career was equally successful. By the time I was 34, just ten years into my career, I had become the youngest head of a telecom business in the country. My ambition was to become the global CEO of a Fortune 500 company.
It was around this time that I first started experiencing the annoying discomforts of early stage Chronic Inflammatory Demyelinating Polyneuropathy (CIDP), an autoimmune disorder. My hands would shake slightly whenever I held up something such as a spoon, fork or a pen, and I would feel a loss of balance every time I tried to climb steps. Over the next seven years, the condition gradually but inexorably deteriorated until I could not even do mundane tasks: climbing steps, looking up while standing unsupported, holding a fork or spoon in my hand, typing on a computer or buttoning my shirt. My arms, legs and fingers had also become so weak that I could not lift even small weights. The many doctors I met could not diagnose my condition correctly, and it was only when I was around 40 — when triggered by a fever, the condition spiked and nearly paralyzed me — that I was diagnosed with CIDP.
The standard treatment – intravenous immunoglobulin (IVIG), prednisone, azathioprine, mycophenolic acid — were effective in the beginning, but soon started to lose their effectiveness. By then I had all the side-effects of steroids: I had put on 15 kilos, my eyesight had faded and I had to have cataract operation in both eyes. My palms, hands, arms and legs had all undergone considerable muscle wastage. I tripped and fell regularly and my left ankle and left wrist were both completely without articulation and would flop down.
I always believe that every problem has a solution; one just has to seek it. And I did find the right solution to this problem: a clinical research being conducted by Dr. Richard Burt, Chief of the Division of Immunotherapy and Autoimmune Diseases at Northwestern University’s Feinberg School of Medicine. An experienced physician/investigator, he had been treating patients with various autoimmune disorders such as CIDP, Multiple Sclerosis, Lupus and others. I contacted the doctor, met up with him and decided to enroll in a study.
The treatment involved removing some of my hematopoietic stem cells, knocking out my immune system using chemotherapy, rituximab, and anti-thymocyte globulin, then rebooting the body by re-injecting the stem cells. Previous data indicated that about 70% of the patients benefited from it — with results varying from remission, to slowing progression, to complete reversal. The doctor also said that there could be about 2% probability of mortality, even though they had not had any such incidents among the CIDP patients.
I underwent the treatment and for me, the condition reversed substantially — albeit not fully — after the treatment. Over the next one year, I stretched myself to the limit, working out three hours a day, rebuilding most of my lost muscles. I also managed to reinvent myself as a bestselling author and motivational speaker, having written my first book, “Oops the Mighty Gurgle,” from the hospital bed. My subsequent autobiography, “From Ouch to Oops”, became a bestseller and I have delivered a few dozen motivational talks to corporations, schools and colleges and my aim in life now is to touch a million lives positively.
I consider myself incredibly lucky to have come across Dr. Burt and his clinical research team. Today, many patients with autoimmune conditions reach out to me for advice, and I urge them to consider the same procedure. Clinical research not only gives hope to patients who otherwise have lost all hope, but also helps to advance the boundaries of medical science continuously. As for me, Dr. Richard Burt and his clinical research not only gave me a second chance at life, but also placed me on a trajectory of life fulfilment that was unthinkable before.
About the author
Ramgopal (RamG) Vallath is an author and motivational speaker based in Bangalore, India. Being afflicted with CIDP, a crippling autoimmune disorder, he was forced to quit his successful corporate career. He reinvented his life after undergoing a clinical research procedure that reversed the condition substantially. Today he is the author of ‘Oops the Mighty Gurgle’, a humorous science fiction for all ages and ‘From Ouch to Oops’, a humorous, yet inspiring biography. RamG is a much sought after motivational speaker and has addressed employees of dozens of corporations and also students of dozens of schools. His aim is to touch a million lives positively. More about RamG at www.ramgvallath.com.