I was diagnosed with Scleroderma in February 2004. I was 37 years old with two very young children. At that time, our happy family of four just moved into a new home in a far western suburb of Chicago. A few months prior, I had started to notice strange changes in my hands, most noticeably that they would turn various colors (blue, purple, white) with exposure to cold or stress. They also became swollen and painful. This phenomenon is called Raynaud’s Syndrome which can be a very serious complication of Scleroderma, and can cause severe and quite painful digital ulcers on the fingers or toes. Another strange symptom I experienced was frequent heartburn no matter what I ate or drank. I also was very tired most of the time, a symptom I attributed to parenting two children under the age of three.
Fortunately, I had a very astute primary care doctor who recognized my symptoms and quickly tested me for autoimmune diseases such as Lupus and Scleroderma. Some patients go for many months, or even years, before having a proper diagnosis. After blood tests indicated Scleroderma, I had to have many more tests to confirm the diagnosis. Then, I had to establish a team of specialists who could treat my condition. My present team consists of five different doctors to treat various complications of my disease.
For about four years, doctors were able to keep my health quite stable with the use of several medications and periodic testing and monitoring of my condition. However, I took a turn for the worse in the fall of 2008 when I began to have severe shortness of breath and a horrible cough. Further testing and visits to new specialists revealed that the Scleroderma had affected my lungs. I am now living with pulmonary fibrosis, which is scarring of the lungs, and pulmonary hypertension (PH) which is high blood pressure in the lungs. The PH can potentially lead to right-sided heart failure so it’s important to be treated promptly and properly. Every day, I take many medications to treat these lung complications. In addition, I need to use supplemental oxygen with activity and at night as part of my therapy which also includes pulmonary rehabilitation. A lung transplant may be needed in the future if this is an option for me.
Many people have never heard of Scleroderma, and sometimes it is only viewed as a skin disease. However, it can be much more than that. It is a potentially fatal disease which can affect many organs of the body in addition to the lungs – the heart, the kidneys, and the gastrointestinal tract to name just a few. About 75 percent of people living with Scleroderma are women, many just like me. More research is needed to help scientists and doctors find both a cause and a cure.