Why scleroderma awareness is important to me
More people are aware of the disease today than when I was diagnosed
For many years before I was diagnosed with scleroderma, my skin was normal but I had joint pain. This was while I was still a child. During childhood, I may have had circulation problems, because my hands and feet were always cold. But I hadn’t yet experienced the numbness and color changes of Raynaud’s phenomenon. I felt short of breath when I had never experienced that before. It wasn’t that I had never really felt short of breath at all, but what I felt was more than I was used to.
I seemed to have some symptoms of scleroderma, even back then. This may have been what is now known as “pre-scleroderma,” but I don’t know for sure. Maybe, I will never know.
When I was younger, people would sometimes ask me why I wore gloves on warm days or why my skin looked a little different from normal. I was once asked if my skin was burned. I would tell them that I have scleroderma. Almost always, the person would say, “Sclero … what?” That doesn’t happen as much now as it did before.
One reason why scleroderma awareness is so important is that it’s more than just a skin disease. Although scleroderma means “hard skin,” it can also occur without skin involvement. This form of the disease is called “sine sclerosis.”
When I was diagnosed in the early 1990s, it was commonly believed that skin involvement determined organ involvement. I don’t think my autoantibodies were tested at the time. I only knew that I had antinuclear antibodies. I think part of the reason for that was because scleroderma is a rare disease.
Because scleroderma affects everyone differently, the type of the disease patients have can’t be classified by skin alone. People with sine sclerosis do not have the skin thickening or tightening of scleroderma. But they do have an abnormal accumulation of scar tissue in their internal organs.
I eventually began to experience skin tightening and thickening around 1993. About two or three years later, I began to have terrible reflux that continues to this day. More is known today about scleroderma than back in the 1990s. We now know that everyone’s experience with the disease is different, and no two people with scleroderma will have the same journey.
Skin affected by scleroderma also changes over time. With time, tight scleroderma skin loosens. My skin has loosened since the ’90s, but overall, it is still thicker than the skin of someone who doesn’t have scleroderma.
Another reason why scleroderma awareness is vital is that more research is needed to find an exact cause. Once a cause is found, it could lead to a cure. But scleroderma is treatable. And thanks to research, there are more treatments available now than in the ’90s.
June is Scleroderma Awareness Month, an entire month set aside to promote awareness of this autoimmune disease.
Scleroderma awareness isn’t just about a month, though. It can happen every day. You can choose to wear a scleroderma T-shirt as a conversation starter. I like to wear pins and wristbands.
About three years ago, to increase awareness of the disease, I called my mayor’s office and got them to issue a proclamation to name June Scleroderma Month in my city.
June 29 is World Scleroderma Day. On this day, my state scleroderma support organization, the Scleroderma Foundation of California, is having a walk called “A Million Steps for Scleroderma.” The walk will take place at La Mirada Community Regional Park in La Mirada, California.
Thanks to awareness efforts, more people now know about scleroderma than in the past. Increased awareness fuels research, leading one day to a cause and a cure. But the need for awareness continues.
Note: Scleroderma News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Scleroderma News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to scleroderma.
About the Author
Joni Lore
Prayers for a cure.
Brandy
I felt the same way when I was younger I was diagnosed with JRA now it been four years since I got diagnosed with scleroderma and not much skin involvement,but I have kidney damage PH and arrhythmia,extreme fatigue this disease isn't a cake walk but it nice to read and communicate with people going through some of the same things it's kind of like having people along for this walk of life we are going through.