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International Patient Advocacy Groups Mark "World Scleroderma Day," June 29 Global Observances and Outreach Bring Attention to Complex, Debilitating Autoimmune Disease FOR IMMEDIATE
RELEASE Media Contacts: European Union: Ann
Tyrrell Kennedy, anntkennedy@gmail.com JUNE 24, 2013 – Tournai, Belgium; Hamilton, Ontario, Canada; Danvers, Mass., USA – An international consortium of patient advocacy groups dealing with the autoimmune disease scleroderma, also called systemic sclerosis, will mark World Scleroderma Day on Saturday, June 29. Events and observances around the world will be held and are designed to foster greater awareness and understanding of this little-known disease. Scleroderma, which can strike women, men and children, is a complex, debilitating – and sometimes fatal – degeneration of the body’s organ and vascular systems. The Federation of European Scleroderma Associations (FESCA), consisting of 23 independent, national European organizations, The Scleroderma Society of Canada, and the Scleroderma Foundation in the United States, are working cooperatively to raise awareness about scleroderma. The groups encourage the international scleroderma community to reach out to media, government officials, and the medical community on and around World Scleroderma Day. June has been observed as “Scleroderma Awareness Month” since the 1980s in the U.S. and several Canadian provinces, with proclamations issued from national, state and provincial governments. The first World Scleroderma Day was inaugurated in Europe on June 29, 2009. In February 2010, the first Systemic Sclerosis World Congress was held in Florence, Italy, where it was officially decided that June 29 would be recognized as World Scleroderma Day. Within the past three years, the day has grown to include observances in Australia, Brazil, Canada, Europe, India, the U.S., and many more countries. About Scleroderma (Systemic Sclerosis) Scleroderma, or systemic sclerosis, is a chronic systemic autoimmune disease characterized by the over-production of collagen, creating fibrosis of the skin and internal organ systems. The word “scleroderma” comes from two Greek words, “sclero” meaning hard, and “derma” meaning skin. Hardening of the skin is one of the most visible manifestations of the disease. There are two major classifications of scleroderma: localized scleroderma and systemic sclerosis. Other forms or sub-classifications, each with its own characteristics and prognosis, may be identified through future research. Scleroderma symptoms vary greatly for each person, and the effects of the disease can range from mild to life-threatening, depending on which parts of the body are affected and the extent to which they are affected. Prompt and proper diagnosis and treatment by qualified physicians may minimize the symptoms of scleroderma and lessen the chance for permanent damage. As in most autoimmune diseases, women are disproportionately affected by scleroderma. Overall, female patients outnumber male patients by approximately 4-to-1. Scleroderma can develop in every age group from infants to the elderly, but its onset is most frequent between the ages of 25 to 55. Beyond gender, other factors, such as race and ethnic background, may influence the risk of developing scleroderma, the age of onset, and the pattern or severity of internal organ involvement. The reasons for this are not clear. Although scleroderma is not directly inherited, some scientists feel there is a slight predisposition to it in families with a history of rheumatic disease. Currently, there is no cure for scleroderma, but there are many treatments available to help particular symptoms. Because scleroderma can affect numerous organ systems, there is considerable variation in the treatments based on an individual’s particular disease manifestation. Why World Scleroderma Day is Important Like many individuals who face life with the complications associated with a little-known or rare disease, those living with scleroderma often feel isolated, alone, and misunderstood as their life and physical abilities change due to the effects of the disease. Beyond the social and emotional impacts of scleroderma, knowledge of the disease among the medical community often is lacking. This leads to inaccurate diagnosis, and a prolonged period before an accurate diagnosis is made, thus resulting in a lack of proper medical intervention during early onset of disease. World Scleroderma Day was created to empower patients and generate greater understanding and recognition of the disease. “Awareness is at the core of our mission,” said Ann Tyrrell Kennedy, the president of FESCA who resides in France. “By joining together on a global level, the collective voice of the scleroderma community can be heard more loudly and frequently, which can lead to greater interest in this disease.” Other scleroderma organization leaders agree. Robert J. Riggs, Chief Executive Officer of the U.S.-based Scleroderma Foundation commented, “In the United States, approximately 300,000 people have scleroderma, but recent studies indicate that the overall annual direct and indirect costs of the disease in the U.S. are $1.5 billion, with a direct cost of treatment for patients reaching $460 million annually. Yet, in the U.S., the federal investment in scleroderma research reaches only about $20 million each year. When you look at those numbers,” Riggs said, “one realizes that scleroderma is not only a devastating disease, but also one that carries a significant economic impact. Clearly more needs to be done to find the cause, better treatments and hopefully a cure.” “World Scleroderma Day brings focus on this disease at a critical time in global research initiatives,” said Maureen Sauve, president of the Scleroderma Society of Canada. “It’s exciting to see researchers working in this field fostering greater collaborations across institutions and international borders to advance science in search of treatments and a cure.” All three leaders agree that momentum for scleroderma research has increased over the past seven to 10 years, including more significant findings than there have been in previous decades. “Like most diseases, scleroderma is a global problem, and solutions will come when we work as a global community, which is the goal of World Scleroderma Day,” commented Tyrrell Kennedy. Upcoming Research and Education Events Numerous national and international meetings are forthcoming in the months ahead that generate scleroderma awareness and education. Key meetings and congresses include: July 26 – 28, 2013, Atlanta, GA., USA: 15th Annual Scleroderma Foundation Patient Education Conference, www.scleroderma.org July 27, 2013, Atlanta, GA., USA: Scleroderma Foundation Continuing Medical Education/Continuing Nurse Education Sessions, “The Lung in Scleroderma,” www.scleroderma.org August 3 – 7, 2013, Boston, Mass., USA: 13th International Workshop on Scleroderma Research www.bumc.bu.edu/sclerodermaworkshop September 27 – 28, 2013, Hamilton, Ontario, Canada: 2013 Scleroderma Canada Congress February 6 – 8, 2014, Rome, Italy: 3rd Systemic Sclerosis World Congress www.fesca-scleroderma.eu/upcoming-events/3rd-systemic-sclerosis-world-congress-2014
For More Information To learn more about scleroderma and events surrounding World Scleroderma Day, please visit the following: In the
European Union: In Canada: In the United
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