We must speak up and speak loudly, raise awareness and funds, educate people, and tell anyone who will listen about this disease.
With continued research, new therapies could provide comforting measures for those of us who suffer from scleroderma’s debilitating effects.īob Saget’s death should be a personal call to all who suffer from this disease. Lifesaving measures could occur earlier with proper research, adequate funding, and the training of medical personnel. Instead, we must manage our symptoms, which means that receiving an early diagnosis is crucial. There currently is no cure for scleroderma. The time it takes to receive a definitive diagnosis can be deadly. Like Bob Saget’s sister and Queen Latifah’s mother, I’d gone to many different specialists to find out exactly what was wrong with me. While I’m not a celebrity, I also hadn’t heard of the disease when I was diagnosed four years ago. “When my mom was diagnosed with … scleroderma in 2013, we’d never even heard of it before,” she told the magazine.
