I received a cancer diagnosis in 2008, at the height of my engineering career. Fortunately, it was easily curable with surgery and a little radiation before work each day for a few weeks. Cancer was the easy part.
One year later, my fingers started to get stiff. A quick visit to my GP and he sent me right to a rheumatologist, who I didn’t know at the time was a Scleroderma specialist. My GP knew right away, but didn’t want to break the bad news before a specialist saw me. I was immediately diagnosed with Systemic Diffuse Scleroderma, which was confirmed after all sorts of tests. I was fortunate to have a great GP and live in a place with a Scleroderma specialist who could diagnose me so quickly.
For everyone diagnosed with this disease, you know the range of emotions that comes along with this diagnosis, from “What is Scleroderma?”, to “How long do I have?”
Everything in between is a blur for the first few visits with the specialists and the more information you get the less clear your prognosis becomes. It’s a rollercoaster ride to be sure.
For me it was back on the rollercoaster from just a year before with my Cancer diagnosis. But this was to be a bumpier ride.
Over the next 11 years (I didn’t think I was going to make it past 5 years) the rollercoaster continued, as it does to this day. Functioning at work, then disability, then insurance company denials, then back to work as a result, sometimes almost daily doctor visits, 3 Scleroderma centers, umpteen surgical procedures and Scleroderma related complications, support groups, symposiums, clinical trials, research studies, losing other Scleroderma friends to this disease every year, and now for ALL of us, COVID-19.
But, I have met some incredible people along the way, made some wonderful friends, met incredible doctors and researchers, participated in research projects as a patient representative, volunteered my time as a sample patient in medical classrooms where new doctors were learning about Scleroderma, traveled around the world meeting Scleroderma patients everywhere I went, from Europe to Southeast Asia, starting working on the Global Scleroderma Initiative (www.globalscleroderma.org), recently started Scleroderma Living (www.sclerodermaliving.com).
With all this experience and the related endeavors I have been involved with, I felt it was time to speak up about it all. Speak as an advocate, speak to patient groups to help patients understand this disease more and help solve the problems that come with it, from disability and insurance, to managing daily life.
I am here to make a positive difference in the lives of the Scleroderma community around the world.