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Woman diagnosed with rare disease after years of misdiagnosis

The symptoms of different diseases can be very similar or identical. For this reason, Oregonians must rely on the expertise and training of doctors and medical professionals to properly diagnose a condition. The misdiagnosis of a disease can cause irreparable damage. Not only does a failure to diagnose an illness cause a delay in treatment, but patients may also suffer from a worsened condition or even death.

The story of one woman demonstrates the harm that can result in the delay of a proper diagnosis. After 14 years of suffering from numerous ailments that doctors assured her were not related, she was finally diagnosed with a rare and incurable disease.

Over the years, the woman was told by doctors that she had psoriasis, chronic sinus and ear infections, and asthma. She underwent sinus surgery and suffered from other ailments. An infection that landed the woman in the emergency room eventually led to the correct diagnosis. She spent eight days being seen by every specialist in the hospital. After lots of tests and blood work, she as diagnosed with Wegener’s granulomatosis.

Wegener’s disease is a rare autoimmune disease that damages blood vessels in the sinuses, kidneys and other organs. Around one in 30,000 Americans suffer from the disease. If left untreated, Wegener’s can cause kidney failure.

Although the news was heartbreaking, the woman was also extremely relieved to finally have a diagnosis. There is no cure for the disease, but there is the possibility it will go into remission after a long and hard treatment. The treatment involves long-term prednisone and chemotherapy, and may take up to two years.

The woman hopes her story will spread the word about Wegener’s disease and help prevent similar delays in the proper diagnosis of others. Fundraisers are being held to help spread awareness of the disease and to help pay for her medical expenses.

Source: The Southern Illinoisan, “Woman relieved by long-awaited diagnosis,” Stephen Rickerl, Nov. 27, 2012