My name is Noelle, and I was diagnosed with the Systemic Diffuse form of Scleroderma when I was 21 years old. I am currently 26. I also have an underlying disease called Polymyositis, which is inflammation of many muscles. Systemic diffuse scleroderma is rapidly progressing and affects a large area of the skin and one or more internal organs, frequently the kidneys, esophagus, heart, and lungs. This form of scleroderma can be quite disabling.
Scleroderma currently affects about 300,000 people in the United States. Scleroderma means ‘hard-skin broken’ down. It is an overproduction of collagen affecting the skin and underlying tissues. My first onset of symptoms were at 19, which led to a misdiagnose of Lupus. When Scleroderma was finally diagnosed, it had already hit my lungs, heart, and digestive system. We are now trying to prevent it from affecting my kidneys.
For the first year and a half, I did the infusion form of Cytoxan, a chemotherapy drug, that is only experimental. Following that, and since, I have been on an injection form of Methotrexate along with a plethora of other medications.
There is no cure for Scleroderma. It is a chronic, debilitating disease that holds little hope. It is a constant uphill battle that many are fighting. I, for one, feel very blessed every day that I wake up, always hoping that one day there will be a cure.