Scleroderma Stories: 7 Patients and Carers Open Up About Their Experiences

Scleroderma is an autoimmune disease which causes hardening of the skin. This can result in a loss of mobility, and in some extreme cases can affect internal organs. functions as a sounding board for patients and carers to share their own experiences with the disease.

1. Amanda’s Story
Amanda was 39 years old when she was diagnosed with scleroderma in 2007. Although the disease hasn’t spread to Amanda’s internal organs, she has had to stop working due to poor mobility caused by the stiffening in the skin around her joints.

2. Cindy’s Story
Cindy’s daughter Hillary suffers from a severe form of scleroderma. In Hillary’s case, her symptoms include difficulty swallowing, bowel problems, fatigue, severe pain in her joints and bones, fever, allergies and bone dysplasia. Cindy had a silicon breast transplant at the age of 18, which after breastfeeding, doctors believe caused a birth defect provoking the disease.

3. Greg’s Story
Greg is 41 years old and was first diagnosed in 2000. As someone who exercised regularly, he first noticed something was wrong when he began experiencing shortness of breath while working out. After a quick diagnosis it was confirmed that his condition was severe, and that he would likely need a lung transplant in the future. A few months later he had the transplant, and the new lungs are working well and has not yet been affected by the scleroderma.

MORE: Tips for raising scleroderma awareness


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