Scleroderma Stories: 7 Patients and Carers Share Their Experiences

Scleroderma is an autoimmune disease that causes hardening of the skin. This can result in a loss of mobility, and in some extreme cases, can affect internal organs. Scleroderma.org 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

4. John’s Story
John first noticed something was wrong when his hands began swelling. After being prescribed steroids, the swelling subsided, but he began to notice hardened skin on his arms, legs and shoulders. Although, quite unusually, he has no tightening of skin on his fingers. He now has restricted mobility due to the tight skin around the joints in his legs.

5. Kirasia’s Story
Kirasia was first diagnosed in September with diffuse scleroderma. Her worst symptoms include pain in her legs and extreme hardening of her calves. She also has heightened sensitivity in her feet preventing her from wearing closed-toe shoes.

6. Steve’s Story
Steve is 42 and his symptoms first started in 1993, when he noticed that his hands were always cold, despite it being warm outside. Though his condition has deteriorated, Steve is still able to drive and leads a fairly independent lifestyle.

7. Trish’s Story
Trish’s husband suffers from scleroderma, which they first noticed through swelling of his hands and ulcers developing on the ends of his fingers. His symptoms later developed into breathing problems and soreness in his chest. He’s had several tests which have shown no signs of internal involvement.

MORE: How to manage your symptoms

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.