Coping With Rare Diseases

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Thursday, March 7, 2013

Approximately 30,000,000 American deal with a rare disease, which may affect only a tiny number of people. Each of these has its own characteristics and challenges. With new medical advances and government incentives, breakthroughs in many of these areas are more frequent and the lives of many are dramatically improved.

More about Carrie Gallagher: If you ran into Carrie Gallagher on the street, you would have no idea that just over a year ago she was admitted to Greenwich Hospital after coughing up blood in the emergency room, and diagnosed with a serious rare disease called Granulomatosis with Polyangiitis (GPA). She had unknowingly been battling GPA for nearly five years before her diagnosis, suffering from symptoms she assumed were chronic sinus infections and rashes. In the six months preceding her hospitalization,

Then she learned of an FDA-approved treatment she could begin taking in conjunction with steroids to combat her rare disease. Carrie says the treatment regimen did wonders to relieve her symptoms and she immediately began to feel better.

GPA is a rare form of ANCA-Associated Vasculitis (AAV), an autoimmune disease that damages the small blood vessels of the kidneys, lungs, sinuses and other organs. Known as an “orphan” disease, GPA affects about three out of every 100,000 people in the U.S.

More about Lauren Schwartz: Dr. Schwartz is an assistant professor of gastroenterology at Mount Sinai Medical Center. Her clinical focuses include Celiac Disease, Colonoscopy, Enteral Feeding, Flexible Sigmoidoscopy, Inflammatory Bowel Disease, Malabsorption, Percutaneous Endoscopic Gastrostomy, Short Bowel Syndrome and Upper GI Endoscopy.

More about Mary Dunkle: , Vice As the Vice President for Communications, Mary oversees NORD’s website, publications, educational activities, and research program. She has more than 25 years of experience in journalism and public relations, with an emphasis on interpreting medical information for a general audience. She has been with NORD for 13 years.

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Source: WomensRadio

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