The Arthritis NewsletterSpring 2012
Scleroderma: Breaking Free!Written by: Melissa Patton
I began showing symptoms of Scleroderma at three years old but it took five long years to get a diagnosis. It was 1978 and Scleroderma was rarely heard about, especially childhood Scleroderma. Today one can expect a diagnosis within 17 months; of those diagnosed, 88% are female and the typical age of onset is approximately 54 years. Since I was the only known childhood case in Canada at the time, my prognosis was not good. Today, I am a happy Pharmacy student at the University of British Columbia coping with the challenges the disease presents.
I confront daily obstacles that affect my emotional and physical functioning but have found ways to either overcome these obstacles or “grin and bear it”. My skin constrictions, a common symptom of Scleroderma, have softened over the years, so the most visible aspects of my disease are the tightness of skin on my face and the Telangiectasias (visible dilated skin vessels) that cover my face and body in the form of red spots. They cause me the biggest emotional hardship, as I cannot go through a week without someone asking me, “What is wrong with your face?” Although I usually use these moments as opportunities to educate people, I have been known to respond with, “Nothing is wrong with my face. What is wrong with your manners?!”
“Illness can destroy, but it also has the great capacity to bring out the best in people and show us the reasons that human beings choose to suffer through. It is not about how the illness attacks us, or how we feel as a result of that assault, it is who we become in the process of breaking free.” -Melissa Patton
My physical challenges include Raynaud’s phenomenon, gastroesophageal reflux disease, pulmonary fibrosis and intestinal complications. The longer I live with this illness, the more complications arise and the harder it becomes for my health care team to stay “on top” of things. I am fortunate to have a wonderful twelve-person health care team including physicians, specialists and other health care practitioners. My general practitioner (GP) is the “mother duck”. While 55% of patients have a rheumatologist who oversees their disease progression, my GP is more available and has a deeper understanding of the specifics of my situation.
Between hospitalizations and doctors’ appointments, managing my current health situation is a full time job. Living with excruciating chronic pain is exhausting and some days getting out of bed can be impossible. It’s my tenacity that prevents me from allowing my illness to “win” the fight. Currently, I attend classes at UBC and feel blessed because the UBC faculty is kind, supportive and understanding; they see my illness as an inspiration not a barrier.
I am a board member of the Scleroderma Association of BC (SABC). Five female patients founded the SABC in 1984 as a means of raising awareness and offering support to other patients. Twenty-seven years later, two of the original five, Joan Kelly and Jeannette Stach, still serve on our board. Education is key to ensuring patients live well with this chronic illness. Scleroderma can kill you, and we have lost over 200 of our BC members since 1984 due to complications from Scleroderma. While the statistics are grim, I believe that we are getting better at managing this disease and closer to finding a cure.
The person I have become today is directly related to my drive to overcome the challenges I’ve faced for 33 years. Rather than choose to view this disease as the worst thing that could have happened to me, I chose to make it my inspiration for living a life with purpose. My health care education did not begin at UBC, it began with the diagnosis of my disease … the profound understanding of chronic illness and the ability to empathize with patients will be valuable contributors to my work as a Pharmacy Doctor. This career path will be my opportunity to give back to the health care community that has helped me survive … and, I owe it all to my life as a Scleroderma patient!1
1For more information on the Scleroderma Association of BC: http://www.sclerodermabc.ca