What is scleroderma? It’s a chronic auto-immune disease that affects the body’s connective tissues resulting from an overproduction of collagen in the body. The word “scleroderma” means hardening of the skin. It’s a tough disease which affects an estimated 300,000 people in the United States., 80 percent of who are women. It normally strikes individuals between the ages of 25 and 55 regardless of race, ethnic group, or geographic area.
There are two types of scleroderma; localized and systemic sclerosis. Localized scleroderma is more common in children, while systemic scleroderma is more common in adults. Scleroderma varies in each patient. In some cases, the disease causes serious damage to internal organs causing the organs to cease functioning effectively, which can lead to organ failure or death.
There are a variety of medications, and treatments which can help the patient depending on their symptoms; however, there is currently no known cause or cure for scleroderma. It is also important to note scleroderma is not contagious, infectious or cancerous and while research is evolving there is very limited government funding. Research indicates the estimated economic impact of scleroderma in the United States is $1.5 billion annually; direct cost of treatment for patients is more than $460 million annually.
Part of Scleroderma Foundation’s mission is to be good stewards of our community by providing information and resources to enhance the public awareness about this life- altering disease. On Saturday, October 11, 2014, the Scleroderma Foundation TriState Chapter in conjunction with the Greater Rochester Scleroderma Support Group hosted their first African-American Health Awareness Day in Rochester, New York. The Scleroderma Foundation TriState Chapter is a non-for-profit 501(c) (3) organization which provides educational and emotional support to individuals diagnosed with scleroderma throughout the state of New York, Connecticut, and Northern New Jersey.
African-American Health Awareness Day was created to offer an opportunity for those in the Rochester region, and other upstate communities a chance to receive current medical information about scleroderma and its risk factors. Particular emphasis was placed on the African-American community and those diagnosed with scleroderma since they experience more severe complications while coping with this life-changing disease. There are many unanswered questions about scleroderma and why it affects African Americans more aggressively than other racial groups.
This event was design to address some of these questions while providing the public, patients, and their caregivers with disease specific education, available resources, strategies to encourage self-empowerment, and healthy living. Saturday programming was kicked off by New York State Senator Joseph Robach, who represents the 56th district, and Susan B. Anthony, Women’s Right Advocate portrayed by Ms. Barbara F. Blaisdell. The two extended a hearty welcome to our out of town guests.
Part of the program included an award ceremony. Mary Beth Bobik-Kadylak, Director of Patient Education & Support, presented Rosa Johnson, scleroderma survivor, and the “Messenger of Hope” award given by the National Scleroderma Foundation. This was a national honor given for increasing awareness, and providing hope and inspiration to those coping with scleroderma.
Throughout the day, seven speakers from the medical community presented information on many health related areas with a focus on encouraging patients to educate themselves, and be their own health advocates. The keynote speaker was Virginia Steen, M.D., internationally renowned expert in scleroderma from Georgetown University Medical Center in Washington, D.C. Dr. Steen discussed the effects of scleroderma on African-Americans patients; shared analyzed data which highlighted the impact of scleroderma on Caucasian patients’ versus African American patients; and the importance of early diagnosis.
Since Scleroderma presents symptoms similar to other auto-immune diseases such as Lupus and Rheumatoid Arthritis, diagnosis is difficult. As a result, many cases may be misdiagnosed or undiagnosed. In some cases it can take years to get a proper diagnosis. Therefore, it is important for patients to become advocates for themselves and their health. It is imperative that doctors understand the symptoms of scleroderma so they know how to treat the patient.
If you are aware of someone with scleroderma, please encourage them to visit our website at www.Scleroderma.org or call 1-800-867-0885 to learn more about scleroderma, our walk, the Scleroderma Foundation and the efforts of our local support group. This is an opportunity to receive current medical information, meet various doctors, and participate in workshops. Patients and families need to know even in their darkest hour, they are not alone. Although there is currently no cure for scleroderma, we stay encouraged and believe one day, a cure will be found. You may also contact, Marilyn Sibley, Greater Rochester Scleroderma Support Leader at (585) 234-0398.
The Greater Rochester Scleroderma Support Group will be hosting its 12th Annual Stepping out to Cure Scleroderma walk on Saturday, June 6, 2015. Proceeds from this event will help to provide educational programs; stimulate and support research; and enhance public awareness of this disease.
