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. 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

 

3 comments

  1. Reading the Scleroderma News help me indeed a lot as I know that out there, there are many people suffering from this terrible disease. I was first diagnosed with diffuse systemic sclerosis 4 years ago. I live in Mauritius and I travelled to France, Bordeaux to see a Consultant to examine me and give me my medication, which I am taking. I am following treatment at my local hospital. My husband who is a nursing officer helps me a lot by giving me advice about how to cope with this frightening disease. At time I feel like screaming when I feel my skin tightening, my body feeling like weighing like tons, very heavy, my fingers stiff and tightening. I even lost my fingerprints in some fingers. I just hope that I will find a cure someday …

    • Tim Bossie says:

      We are very sorry to hear that you are suffering with this disease, but also glad that you are able to get some information from our pages. It is great that your husband can help you through this sickness. Hopefully some day there will be a cure so that wonderful people like you do not need to suffer anymore.

  2. Thank you verymuch for your kind words. I read your articles with great interest. Please keep it up.It give us hope. I feel more relieved and I try to be more positive in the approach of the disease. I just live my life. It’s today that matters to me, not tomorrow or the future because my future is uncertain as I don’t know how I will be.

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