Discovering herself again: Dina-Marie’s story

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Dina-Marie’s scleroderma journey began in 2012 at a place she knew and loved: the ice rink. As a competitive figure skater in Windsor, Ontario, Dina-Marie spent long hours in frigid air practicing with her teammates. That’s why she didn’t think much of it when her first scleroderma symptom, hand discoloration, appeared.

But as the discoloration intensified and Dina-Marie began experiencing ulcers and joint pain, she decided to see a doctor. At age 17, Dina-Marie was diagnosed with Raynaud’s and prescribed blood pressure medication.

As any teen with dreams and a plan, Dina-Marie had trouble coming to terms with her new, altered reality. She often brushed off symptoms, attributing things like joint pain to all the writing she was doing at university. On the outside, Dina-Marie met everyone with positivity, a pleasant smile and well-manicured appearance. But on the inside, her body was changing.

Around Christmas of 2013, Dina-Marie’s grandmother urged her to see their family physician. Preliminary bloodwork identified inflammation in her blood, so Dina-Marie was referred to a Rheumatologist. Dina-Marie was officially diagnosed with systemic scleroderma after further observation and testing. It was June 5, 2014. A date she’ll never forget.

Now, Dina-Marie is on a handful of medications to manage symptoms like GERD, exhaustion and skin tightening around her hands, wrists, face and the bottom of her legs. She’s unable to make a fist and can’t wear heels because of the skin pain.

Through it all, Dina-Marie, now 23, has displayed immense resilience, courage and confidence. She’s become an active scleroderma advocate on social media and has developed friendships with other patients at scleroderma events. She also started a blog, coffeeandsetbacks.ca.

In February 2017, Dina-Marie accomplished maybe her biggest feat yet when she organized a Gala to raise awareness for the Scleroderma Society of Ontario. Close to 400 people attended the event, which featured dinner and drinks, speeches, a raffle and dancing, and helped raise over $25,000 for scleroderma awareness.

Dina-Marie now makes it her mission to get the name “scleroderma” out there and live life to the fullest. While she’s not the same person she once was, a new strong, beautiful, empowered woman has emerged.