By VERDEL BISHOP Tuesday, May 12 2009

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Vice President of the Scleroderma Care Foundation, Susan Le Gendre with President, Adelwyn Holder. ...

WHEN Susan Le Gendre was first diagnosed with Scleroderma six years ago, the diagnosis and the rapid progression of the disease were traumatic experiences. Her physical appearance changed rapidly, she was depressed most of the time and also felt very isolated. She felt there was no one to share the experience with outside of her family.

Inspired by her own illness and its psychological effects on her personal life, Le Gendre has joined with several other Scleroderma sufferers to form the Scleroderma Care Foundation (SCF), where they gather to support, share, and network. Le Gendre explained that SCF will assist people who have struggled with the symptoms and psychological effects of the disease. She said there is need for nationwide public awareness about the disease.

The SCF was launched last October by Le Gendre with the support of her son, Adelwyn Holder.

“It’s not an easy thing to go through. I am mentally in a better place now, but I remember my early years trying to cope with the disease. It affects your life in so many ways,” Le Gendre said. “It took some time to get SCF off the ground but I am happy that it is functional. We have nine members that ettend regular meetings but there are a lot of people that are sufferering in silence. SCF will help many sufferers to cope,” she said.

“I have come a long way, and I want to help others cope. I still suffer from the effects of the condition. I have good days and I have bad days, but I have the support,” she added.

Scleroderma is a chronic autoimmune disease characterised by a hardening of the skin and other organs. It generally starts before the age of 50 and women are more commonly affected than men. The exact cause or causes of Scleroderma are still unknown, but scientists and medical investigators in a wide variety of fields are working to make those determinations. It is known that Scleroderma involves overproduction of collagen.



Six years ago Le Gendre didn’t know what she was dealing with until she got very ill and doctors told Le Gendre she had two years to live. She was forced to leave her job as a primary school teacher after the disease took a toll on her mentally and physically. With little financial support, she was forced to send letters to companies asking for help.

Today, Le Gendre spends her time researching information on Scleroderma and home schooling her eight year old twins.

She is hoping that doctors, counsellors or anyone who can contribute in anyway to the foundation will come forward to support the efforts of the Foundation.

SCF is based at Le Gendre’s home at 18 Opal Drive, El Dorado Gardens. To participate in SCF support sessions or to contribute your services, call 222-5037 or 756-3930.