Greetings! I am Susan Le Gendre 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 susan-le-gendre@sclero.org.