Beasley, Allen, Crow, Methvin, Portis & Miles, P.C.

Senator Kirsten Gillibrand (D-NY) has introduced a bill in the United States Senate to raise awareness of scleroderma and fund research into the disease and its secondary conditions, according to a press release issued by the Scleroderma Foundation.

Scleroderma is a chronic and disabling connective tissue disorder that involves changes in the skin, blood vessels, muscles and internal organs. For most, the condition is progressive. If the gastrointestinal tract, heart, kidneys or lungs are involved, the condition can be fatal. Secondary conditions resulting from scleroderma include gastroparesis and pulmonary hypertension.

The Scleroderma Research and Awareness Act, co-sponsored by Senator Charles Schumer (D-NY) gives hope to the 300,000 Americans and their families living with this disease. The legislation specifies:

1. Directing the National Institute of Arthritis and Musculoskeletal and Skin Diseases at the National Institutes of Health to expand research related to scleroderma. Priority areas would include:

• Development and evaluation of new treatments.
• Research on the relationship between scleroderma and secondary conditions including: pulmonary hypertension, gastroparesis, Raynaud’s phenomenon, and Sjogren’s syndrome.
• Establishment of family and “childhood-onset” patient registries.
• Support for the training of new investigators.

2. Directing the Centers for Disease Control and Prevention to establish a scleroderma public awareness campaign highlighting disease symptoms, prevalence, related conditions, and the importance of early diagnosis.

Treatment for scleroderma includes corticosteroids, immunosuppressants and NSAIDs. Other treatments for specific symptoms, such as heartburn and gastroparesis, include antacids or Reglan (metoclopramide), medicines to improve breathing, and blood pressure medications.

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• Gastroparesis group to petition Sen. McCain about criticism of IBS funding
• August is Gastroparesis Awareness Month

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