The Scleroderma Care Foundation PDF Print E-mail

Till some time in 2008, Scleroderma was a relatively unknown disease in Trinidad & Tobago. Today, awareness is increasing, slowly. What little was known though, was that Scleroderma was an autoimmune disease of the connective tissue characterized by the formation of scar tissue in the skin and organs, due to the overproduction of collagen within the host body. Scleroderma however, went a lot deeper than that and with no known cure, it posed a serious threat to a person’s quality of life, affecting critical organs such as the heart, lungs, and kidneys.

We later discovered that there were a handful of men and women here, that had been diagnosed with Scleroderma. Some lacked the comprehensive understanding, resources, or mutual support needed to manage or combat the disease. Having recognized an opportunity to develop a much needed and action-oriented community around Scleroderma.

Founded by Adelwyn Holder and Susan Le Gendre in October 2008, the Scleroderma Care Foundation was born, incorporated as a  non-profit organization dedicated to the overall improvement in the quality of life for those who have been touched by Scleroderma. This vision was also to be supported by our core mission to help Scleroderma patients, their families, and respective communities through mutual support, education initiatives, stimulation of local research, bringing about a greater awareness of the disease.

We also aim to treat each patient as we would a member of our own family and provide the best support possible, through caring, compassion, and our guiding principles. These principles effectively govern our interactions with patients and their families, physicians, donors, supporters, and the public. They effectively seek to;
  • Build trust and open communication throughout the foundation, our members, and the communities which the foundation serves
  • Strive for the highest levels of personal integrity and honesty, in every aspect of our activities
  • Always exercise, exhibit, and promote respect, courtesy, and compassion in every aspect of our activities, and our interactions with our members
  • Work collectively and cooperatively through teamwork and inclusion, to achieve excellence, in all of our endeavours.

Today, we are working to develop those essential support services and mechanisms which are required by all Scleroderma patients. Similarly, we are seeking to also educate others on the threat Scleroderma poses to the life of our loved ones, and in turn bring about a meaningful and noticeable change in the lives of all involved. We encourage you to support us on this important journey through your own support and spreading word of Scleroderma.