Scleroderma survivor, Susan Spence-Le Gendre and Founder of the Scleroderma Care Foundation.
—Photos courtesy THE SCLERODERMA CARE FOUNDATION
Scleroderma: raising awareness
Scleroderma survivor, Susan Spence-Le Gendre has been battling the life-threatening condition for over a decade. The discomfort never stops — pain, fatigue, weakness, aching muscles, joints and bones, thickening and hardening of her skin, severe change to her physical features, swelling hands, and digestive and gastrointestinal tract problems are some of the constant problems that Spence-Le Gendre has to bear daily—they are all symptoms of a disease which continues to be misunderstood and rarely properly diagnosed in Trinidad and Tobago. In fact Scleroderma is relatively rare and local statistics for the disease are not available. Spence-Le Gendre said many people with the condition face unique challenges that are not addressed and continue to be ignored. At the top of her agenda is spreading Scleroderma awareness. Five years ago Spence-Le Gendre and her son, Adelwyn Holder founded the Scleroderma Care Foundation (SCF), after realising a need for nationwide public awareness about the rare, chronic autoimmune disease and to reach out to other sufferers.
Spence-Le Gendre’s journey as an advocate for Scleroderma awareness has been challenging. Over the years SCF has hosted various awareness initiatives which have had little or no support from the powers that be. The organisation’s major awareness campaign is an annual walk around the Queen’s Park Savannah, Port of Spain which will take place this year on May 3. The SCF has 30 members including survivors, spouses and friends of survivors, persons who have lost a family member to Scleroderma and persons who care and want to support.
Spence-Le Gendre said the support group has made a significant impact but more needs to be done. The support group is in need of a permanent place to call home. “Being both an advocate and survivor has not always been easy as I too have to deal with the onslaught of the disease. I’ve had to deal with the loss of fellow survivors, there have been times of worry for my own survival, friends’ helplessness when I could not help, and of course joy when we have improvement and triumph. An impact has and is being made in the lives of the persons directly connected to the support group and persons who support us. But we have not had a significant impact on the wider public, due to limited funding, and resources to help propel the organisation forward. We believe these would help us to make the profound difference and impact we set out on our journey to achieve,” Spence-Le Gendre said.
“The first immediate need of our group is a permanent space where we can meet and have access to the services and programmes that the Foundation would like to offer. Aside from that, we would continue to rely on the support of the wider community for the financial support required to continue our efforts. Since our launch in 2008 we have been meeting every six to eight weeks at my home in El Dorado. Our main accomplishment over these five years is that we, the survivors have built solid friendships, which I know is a comfort and joy to those who, at first felt alone. We are at peace and have the strength now to get up each day to continue our fight against Scleroderma. It is for this reason I will keep pressing on with the help and support of my family as I really pray that other survivors would join us to share the positive benefits of a support group.
“Over the years we have touched on a lot of topics, which helped improved the quality of our lives. One of our first discussions was the adoption of a more natural diet consisting of fruit and vegetables, which helps us get the nutrition needed. We have shared information on caring for our hands and feet that we should avoid cuts and bruising; techniques for coping with everyday challenges, and the benefits of massages and simple daily exercise. We have touched on medication that helps. We encourage and uplift each other how best we can. Sometimes, we simply share our triumph and enjoy each other’s company.
Some of our members have been coping with Scleroderma for five years, some for fifteen years and some have just been diagnosed. The group’s longest Scleroderma survivor has been battling with the condition for over 26 years. Based on world statistics I estimate that there are about 100 people affected with the condition in Trinidad and Tobago,” Spence-Le Gendre said.
A former primary school teacher, Spence-Le Gendre said public reaction to her condition is negative; she is regularly shunned and looked upon with scorn while trying to get a taxi or going about her daily activities which she blames on lack of education and awareness. She said the stigma attached to the condition is also one of the factors that keep some scleroderma patients away from attending the support sessions. “Scleroderma affects each individual differently. Symptoms are basically similar, but come at varied times in the progression of the disease—pulmonary fibrosis, respiratory challenges, renal failure, heart disease, acid reflux, hair loss, irritable bowel syndrome, raynauds, gangrene, urinary tract dysfunction, calcinosis, positioning of the limbs and dental problems are just some of the challenges we face. We are mostly concerned with the way the public treats with us, due to the lack of awareness in our country. Then, too, our health system, coupled with financial issues, is a major concern for us.
“There are stigmas attached to diseases people do not understand, especially where the symptoms of the disease are unusual, diverse, and often disturbing. We have found that some survivors are prevented by their families and loved ones from coming due to fears of being further marginalised for aligning themselves with other Scleroderma patients.
“Some have felt that it is a pity party that we have and do not want to be a part of that. Others feel they are strong enough to go it alone, and do not require the support and encouragement.
“A few may feel embarrassed about their condition. There are a host of reasons why people hesitate to be part of any group, but, more often than not lies a false sense of pride. There is no cure for Scleroderma. Sometimes we have no choice but to wait for weeks or months for medical care, but we can better manage the disease with proper medical treatment.
“There were times of course when I became depressed and wanted to give up; to just stay in bed and let it ravage me. I remember forcing myself to get up and move. I remember crying every day because the fight was difficult for me. But recently I have come to know such peace and joy as I have changed my focus and zest for life. God has been my main