Online support for scleroderma patients

Depending on the rarity of the condition, it can also be a problem that isolates the sufferer socially and professionally, even within the family.

Last year, together with her son, Adelwyn Holder, Susan Le Gendre, who has Systemic Scleroderma, launched the Scleroderma Care Foundation (SCF), after realising a need for nationwide public awareness about the disease and to reach out to other sufferers.

SCF is now an affiliate of the International Scleroderma Network (ISN). As it happens, the ISN site encompasses over 5,000 pages of Scleroderma related information, in 22 languages. This therefore positions the ISN as a vast resource for reliable information on Scleroderma symptoms and treatments, along with many diseases that are closely related to, often confused with, or often occur in conjunction with Scleroderma. The ISN also has a 24 hour online support group and over 900 patient and caregiver stories, in many languages, with most of the foreign stories translated into English.

Scleroderma is a chronic disorder marked by hardening and thickening of the skin. It can be localised or it can affect the entire body (systemic).

There is no cure for Scleroderma.

The symptoms of Scleroderma vary greatly from individual to individual, and its effects Scleroderma can range from very mild to lifethreatening.

Since Scleroderma presents with symptoms similar to other autoimmune diseases, diagnosis is difficult and there may be many misdiagnosed or undiagnosed cases as well.

Taking her mission to support Scleroderma patients one step further, Le Gendre launched www.sclerodermacarefoundation.

org, earlier this month. She said the Scleroderma Care Foundation’s website represents a commitment to promoting awareness of the disease in Trinidad and Tobago and garnering support for patients. Still in development, the site aims not only to serve as a valuable resource for information on Scleroderma, but to provide patients and visitors with an aggregation of articles on medical developments, research initiatives, and inspirational stories from patients around the world.

Le Gendre said although persons afflicted with Scleroderma and their families and friends are faced with difficult challenges, they can choose to maintain hope and a positive attitude.

She said there will be feelings of fear, frustration and hopelessness, but they do not have to succumb to it.

“Our website is a major step towards public awareness.

Scleroderma is gravely affecting the lives of the afflicted, our families and friends; compromising the quality of our lives and robbing us of so much. Generally, people are oblivious to the drastic behaviour of this rare auto-immune condition. The time has come for the general public to become aware of this truth.

The fact is; anyone can get Scleroderma,” she said.

“Till some time in 2008, Scleroderma was a relatively unknown disease. What little was known, was that it was an autoimmune disease of the connective tissue, characterised by the formation of scar tissue in the skin and organs.

Scleroderma however, went a little deeper than that, and with no known cure, it posed a grave threat to a person’s quality of life, affecting critical organs such as the heart, lungs, and kidneys.

“It was later discovered that there is a handful of men and women here in TT, diagnosed with the disease.

Some lacked the comprehensive understanding, resources, or mutual support needed to manage or combat Scleroderma. Having recognised an opportunity to develop a much needed community around Scleroderma, the Foundation was born.

“Based on the response and feedback to date, we are quite confident, that this was a very positive and integral step toward meeting the Foundation’s objectives. We hope that these efforts would assist us in finding previously unknown persons with Scleroderma and expand our little family, stimulate a much more consolidated effort within the medical community, and educate the general public that they have nothing to fear from the disease – but we must work together to improve the quality of our women and men which have been affected,” Le Gendre said.

“Our Support Group is fantastic.

We meet to share ideas and discuss topics relevant to our health. This is just the beginning for us at the SCF job on our website. There are 35 people that are registered for our support meetings every five weeks, 15 of which are actual sufferers, while the others are made up of friends and family members. The website will facilitate those with the condition that are not mobile and those that live too far away.” According to Le Gendre, SCF’s online presence is further expanded through Facebook and Twitter Soon to be implemented on www.sclerodermacarefoundation.

org, are tools which would allow patients and visitors to interact and engage in various discussions on Scleroderma, share their stories and experiences, learn of upcoming programmes and events, and much more.

Since its launch, the website has visitors from around the world, including the United States, Canada, Argentina, Japan, the Bahamas, United Kingdom.

Le Gendre has been wrestling with Systemic Scleroderma for almost seven years. Because the disease is frequently misdiagnosed, she went for over a year, without knowing the true nature of her illness. In the early stages, she was subjected to a demanding diagnostic process and felt powerless, isolated and frightened, knowing that changes were occurring in her body that could not be explained. One doctor even told her to put her house in order because she was going to die.

With constant pain racking her body, Le Gendre faced changes in her life on several levels. A teacher by profession, she had to stop working altogether and had little or no support.

But all of this has changed now.

Although Le Gendre’s battle continues, she is in a better place spiritually and emotionally and is on a mission to help others overcome their fears about the condition and get the support they deserve.

Le Gendre is hoping that doctors, counsellors, or anyone who can contribute in anyway 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 or log on to www.sclerodermacarefoundation.

org.