This is the Formidable Force Facing Down Behcet’s Disease

Sometimes, you just gotta be an unstoppable force…

What do you do when you’ve been diagnosed with a disease like Behcet’s, something so rare that information and resources about it are scarce to non-existent? A disease affecting so few people, even your own doctor may never have met a patient with it?

Some people might despair; others might stoically soldier through the symptoms of painful ulcers in the mouth or genitals, eye inflammation, skin lesions, and arthritis. Then you have those who do something to fill the vacuum by volunteering or going to work in advocacy and awareness.

vacuum
Which is probably far more productive than my normal method of filling a vacuum… [Source: Giphy]
One great example is the American Behcet’s Disease Association (ABDA).

Founded in 1978 by the mother of a child with Behcet’s Disease, ABDA is a nonprofit organization dedicated to supporting, educating, and empowering the roughly 16,000 to 20,000 people diagnosed with Behcet’s in the United States. It runs fundraising and awareness events throughout the year, and operates a hotline, run by patients, to answer questions about living with Bechet’s. Board Members and hotline operators alike are volunteers—because they’ve lived Bechet’s first-hand.

These are people like Sandy McElgunn, a past president of ABDA whose first symptoms appeared when she was a little girl. It took her years to receive a correct diagnosis, but she still experiences overwhelming fatigue, migraine, joint pain, and painful mouth ulcers. McElgunn admits that staying positive can be difficult, but she’s thankful to have a loving family that supports her. And she, along with the other members of ABDA, has a mission to educate the medical community and lobby for more research.

Sandy McElgunn is President of the American Behcet's Disease Association
Sandy McElgunn receiving a revitalize dose of hug therapy. [Source: Rare Daily]
Last August McElgunn and current ABDA President Deb Kleber took part in a broader effort to meet with members of Congress, urging them to support rare disease research and to support the 21st Century Cures Act—which would establish and fund an NIH “Cures Innovation Fund” for biomedical research. (The bill passed in the House last summer but has so far stalled in the Senate over disagreements on how to pay for the initiative and amid debate over loosening FDA approval requirements.)

Regardless of the outcome of this and other lobbying efforts, you can’t beat the feeling of knowing you’re helping someone, somewhere who really needs it. And you can’t deny how important it is to be part of an active community that’s bigger than yourself.


Ronald Ledsen

Ronald Ledsen

After emigrating from his native Sweden, Ronald spent a stint in the Merchant Marines while trying to work out what he wanted to do with his life. He discovered a love of writing while helping a friend write anonymous Harry Potter fan-fiction online; he discovered meaning to his writing when he began journaling after an anxiety disorder diagnosis. Ronald is most relaxed when spending quiet time with his wife, two sons, and hyperactive cat.

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