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Behcet's sufferer hopes to bring awareness and research for rare disease

By: Lacy Hilliard
Tomahawk Writer/Photographer

There are thousands of known curable and incurable diseases in existence. The more sufferers there are of a particular disease, the more funding is designated to research toward treatments and cures for said diseases. However, for sufferers of rare diseases, like Johnson County resident Katie Hall, there is a significant lapse in research funding.
Now age 31, Katie Hall was diagnosed with Behcet’s at age 23, though she’d likely been unknowingly battling the disease for years. Difficult to diagnose, Behcet’s presents various symptoms that can easily be attributed to other diseases and because it’s comparatively rare in the United States, it may take years to receive a proper diagnosis.
Behcet’s, which is sometimes referred to as Silk Road Disease, is believed to be an autoinflammatory disease that results in damage to blood vessels throughout the body. Common in both the Middle East and Asia, little is known about the American form of Behcet’s, which seems to impact women more than men. Tough Katie Hall says she’s, “come to terms” with the disease, the symptoms associated with Behcets can be devastating including severe pain, lesions on various parts of the body, eye inflammation (and in severe cases blindness), arthritis, gastrointestinal symptoms and lung aneurysms to name a few.
Hall feels it is her duty to inform people about Behcets and because there’s no cure, Hall knows that the more attention garnered for the lesser-known disease, the greater the chance of obtaining a cure. “I share mostly to help other people,” said Hall who knows first hand how lonely a Behcet’s diagnosis can be. With no known cause and no cure, the only course of action for Behcet’s sufferers is to treat the various symptoms associated with the disease.

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