I am living proof that clinical trials change lives. I was diagnosed at the age of 8 with an ultra-rare disease, congenital panhypopituitarism, and in the 1960s, had the opportunity to participate in the first Canadian trial for human growth hormone.
In my twenties, I began feeling the effects of osteoporosis by fracturing my hand, then in my thirties, my back, then my ankle. At one point, I was using a walker. I spent much of my time nauseated, lethargic, and constantly adjusting doses of cortisone to prevent the next Addisonian crisis. I was morbidly obese and constantly struggling to lose weight. I was in and out of the hospital. I was followed by endocrinologists, cardiologists, rheumatologists, orthopaedic surgeons, neurologists, allergists, neuro-opthlamologists, a very frustrated family doctor… Every time a new drug was introduced into my body, my entire metabolism would be altered for months — even years. I had struggled to make it through university and then a Masters’ Degree and was determined to keep working as a teacher but I was constantly on and off long-term disability.
Finally, in my early 40s, after speaking to numerous endocrinologists and spending a great deal of time doing my own research at the medical library of the University of Ottawa, to the point that the librarian asked me when I was finishing my medical degree, I eventually found a clinical trial on the use of growth hormone in adults. This clinical trial changed my life by proving that an adult who secretes no growth hormone can benefit enormously from receiving synthetic growth hormone.
Eventually I exchanged my walker for skates, rode a bike after 30 years of watching the cyclists go by, was able to take exercise classes, and experienced a joie de vivre that is difficult to put into words. And now in my fifties, I am enjoying the best health of my life. Two weeks ago, I ran my third 10K, an achievement that I could have never envisioned and absolutely amazes the doctors who treated me when my health was so poor. Almost three years ago, I married a wonderful man and I can’t tell you how amazing it is to share my life with someone after so many years of being alone. I remain a person who takes medication six times per day, who has ups and downs and faces the issues typical of Canadians with rare disorders but I have hope.