“Scleroderma is not contagious; it is not infectious; it is not cancerous or malignant. There are an estimated 300,000 people in the United States who have scleroderma, and one third of whom have the systemic form of scleroderma. Since scleroderma presents with symptoms similar to other autoimmune diseases, diagnosis is difficult and there may be many misdiagnosed or undiagnosed cases as well." While treatment is available for some forms of the disease, scleroderma is not yet curable. Due to the fact that scleroderma is a relatively rare disease, it has not gained worldwide recognition; therefore, the research budget for this disease is relatively small. For example, the Scleroderma Foundation, which is a leading nonprofit supporter of scleroderma research only has an average of $1 million a year to find the cause and cure for the disease. In fact, according to the Scleroderma Foundation, “The National Institute of Arthritis and Musculoskeletal and Skin Diseases (NIAMS), a part of NIH, provides funding for the majority of scleroderma research. Although NIH grants to scleroderma researchers have increased in recent years, scleroderma funding is still a relatively low priority. The Scleroderma Foundation has a critically important role as catalyst—to fund and to stimulate new research and new ideas. The Scleroderma Foundation is enlisting the support of legislators and other decision-makers to establish a higher profile for scleroderma and the needs of patients. The key to all our efforts—to ensure that productive research moves forward—is the continued generosity of our individual and corporate donors”.
The Scleroderma Foundation’s goal of providing education, support, and research is admirable, and I know personally that it had helped my mother in the past to have an organization that helps patients and their families to cope with the disease, while helping to promote public awareness. However, they cannot do it alone. A yearly budget of $1 million is not going to get the job done. Much more money for research is needed in order to find a cure. My goal is to help spread the word about this terrible disease that I know only too well. By getting people to understand the devastation that it causes, I hope to increase awareness and hopefully encourage people to make donations to help in the research. My mother’s life after she was diagnosed with scleroderma was filled with pain – both mental and physical. While she rose to the challenge like a champion, my wish is that nobody will have to go through what she went through for more than two decades