In 1989, Dina Cox’s scleroderma story began. At just 20 years old, she was diagnosed with limited systemic sclerosis. But because it was even more rare then than it is now, it took doctors more than one year to confirm her condition.
“For me, it started with severe heartburn, stiff joints, some hair loss, bumps on my fingers and fingertips that turned blue in cold weather,” she said.
Eventually, a rheumatologist who worked for Stanford Medical Center was able to make the diagnosis – which ultimately impacted Dina… and her grandmother. After sharing the news with her family, Dina’s maternal grandma recognized the same symptoms in herself. And against all odds, she was delivered the same diagnosis.
What happened in the years to follow was a bit of a rollercoaster ride – a journey of highs and lows. Of good days and bad. Of sickness and health.
Able to manage scleroderma with her medication, Dina considered herself in the clear at age 30.
“I thought I was cured,” she said. “But that was just my youth talking.”At 42, Dina was diagnosed with a rare liver disorder – primary biliary cholangitis and chronic autoimmune hepatitis (overlap syndrome). With liver enzymes almost 10x the normal limit, experts believed her scleroderma had been silently attacking her liver for decades. So, she immediately began seeing a hepatologist from California, who flew into Las Vegas every month to meet with her. With his help, plus immunosuppressants and steroids, she was ultimately able to stop the attack on her liver… only to encounter another obstacle.
Four years later, Dina began suffering from shortness of breath. And after meeting with a pulmonologist – undergoing breathing tests, CT scans and chest X-rays – she finally had an open lung biopsy, which revealed interstitial lung disease.
“At that point, scleroderma had moved onto attacking my lungs. And the only treatment was a positive attitude,” she said.
Then, in 2019, Dina’s iron levels and platelet counts also took a dive, which led to her being diagnosed with iron deficiency anemia and autoimmune hemolytic disorder – bringing the total to an overwhelming five autoimmune diseases, plus annual monitoring for pulmonary arterial hypertension (a condition that’s common in scleroderma patients).
“Is it hard at times? Yes. Is it frustrating at times? Yes,” she said. “But, I truly believe anyone living with a chronic condition will learn to cope.”
Dina, for example, was forced to quit her job to focus on her health. Facing fatigue and fear, she simply didn’t have the capacity to continue as a caseworker for Child Protective Services.
“I felt worthless, like I was no longer saving the world,” she said. “But, I finally came to terms with the fact that I was saving myself.”
Looking forward to the future, Dina hopes people will still ask, “What is scleroderma?” Not because it’s an incredibly rare disease, but because it’s been eradicated and is now a disease of the past. And on behalf of everyone in the scleroderma community… we wholeheartedly agree.
Bonus: Advice from Dina
“Research everything your doctors tell you. Read, read and then read some more. Ask a lot of questions… and make sure your doctors answer all of them. If a doctor doesn’t have your back, they’re the wrong doctor. If you don’t connect with a doctor, you need a new doctor. Research medications and drug companies, and all they have to offer. Be your own best advocate.”