2017 Stepping Out - Nebraska (Heartland Chapter)

My Home Team!
My Home Team!

Janet's Jackpot

Scleroderma: hard word, harder disease.

A bit about scleroderma in case you are not familiar with this disease. Scleroderma is an autoimmune connective tissue disease that affects small blood vessel circulation and collagen producing cells throughout the whole body. More simply put, it can affect almost every system in the body. While collagen is part of all our body organs, the most important ones affected are lungs, kidneys and heart (the important ones!) Scleroderma is rare, chronic and has no known cure—yet. And I emphasize “yet”, as aggressive research is producing more options for us patients, but there is more that needs to be accomplished. Ultimate treatment can include a stem cell transplant.

After a few bumps in the road, and some mis-diagnosis (a very common journey for scleroderma patients) I was diagnosed with CREST syndrome (also known as systemic limited scleroderma) in January 2015. While a variety of symptoms pop up now and then, my main issues are Raynauds and Esophageal dysfunction—the C and E of CREST. I get cold easily, and warm up slowly because of changes in small blood vessel circulation. This causes pain and numbness in my hands, and a whitish, blue color change. I have trouble with some specific movements, and on some days I just don’t work quite right. My super physicians monitor lung, heart and kidney function closely, and have not found any disease progression to these areas. (I have hit the jackpot with this healthcare team!).

Scleroderma patients are living an unpredictable life facing an uncertain future. We are excited about being part of our first Stepping Out to Cure Scleroderma and appreciate any support provided. Whether you walk, donate or wish us well, thank you for your support and encouragement as part of Janet’s Jackpot Team!

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