Susan Le Gendre Spence

ISN Support Group Leader for Trinidad and Tobago

I am happy to be part of this quest.

Greetings! I am Susan Le Gendre Spence from Trinidad and Tobago. I love music and spending time with my family.

My love for teaching was curtailed in 2002 after major spinal surgery. Recovery was tough. Just when I thought I was better I realized something else was wrong. For the entire year of 2003 I had to deal with changes no doctor could assist with. My hands hurt; my energy levels fluctuated; my hair fell out; my skin became many shades darker; I experienced loss of pigmentation on my chest, the back of my neck, ears and scalp. People often asked if I was burnt. A racking cough greeted me every morning upon waking.

After many trips to medical professionals, I was diagnosed with diffuse systemic scleroderma in April 2004. By then I had Raynaud's, skin and lung involvement. One doctor actually gave me two more years to live in October 2005. I refused to become depressed about it. I remember falling apart and crying that day! I cried because I felt alone. That I never heard of scleroderma. That no one I knew ever heard of it. I cried because my twins were only five years old then.

But through the pain that day in 2005, I put all my trust in my religious faith. It is now five years since the onset of my scleroderma symptoms. I am alive and doing better. I changed my diet three years ago. I consume a lot of fruits and vegetables. I drink a lot of water and do all I can to avoid stress and be comfortable.

Despite the challenges I have learnt to see the good in all things. I believe that all things happen for a reason; a purpose. In Trinidad there is a small group of scleroderma patients. However there was no support nor assistance for the afflicted and their families. I started doing research because I decided to start a non-profit company here at home. I found the nonprofit International Scleroderma Network (ISN) and e-mailed Shelley Ensz right away. She accepted me as an ISN volunteer and Group Leader for Trinidad and Tobago.

My hope is for a cure some day soon, and for a high level of public awareness so that scleroderma patients will receive the overall treatment they need. Lots of love to everyone. My email address is [email protected].

Related Links

Online support for scleroderma patients.

Last year, together with her son, Adelwyn Holder, Susan Le Gendre Spence, who has Systemic Scleroderma, launched the Scleroderma Care Foundation (SCF), after realizing 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). Trinidad and Tobago's Newsday. 09/15/09. (Also see Susan LeGendre)

ISN Trinidad and Tobago Scleroderma Support Group Launched

Scleroderma support group launched. 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. Trinidad and Tobago's Newsday. Posted 05-12-09. (Also see ISN: Susan LeGendre)

SCLERO.ORG is the world's leading nonprofit for trustworthy research, support, education and awareness for scleroderma and related illnesses. We are a 501(c)(3) U.S.-based public charitable foundation, established in 2002. Meet Our Team. Donations may also be mailed to: