My name is Sandy McElgunn. I am the President of the American Behcet’s Disease Association (ABDA) and a Behcet’s Disease patient. I have had Behcet’s Disease since I was a very small girl, but went misdiagnosed until my doctor finally diagnosed me correctly years later.
I run a 1-800-hotline out of my home with other operators that help answer questions about Behcet’s. It’s my primary mission in life to educate the medical community about this rare and unheard of disease. About 15,000-20,000 patients are presently diagnosed with Behcet’s Disease in the U.S. Many doctors never see a Behcet’s Disease patient in their lifetime in practice.
The ABDA is working hard to spread awareness and to educate doctors and the public about this multi-system disease. Behcet’s Disease is often misdiagnosed with Lupus, MS and Crohn’s, as these conditions share many of the same symptoms.
I live with many different symptoms, my most active being painful mouth ulcers, sometimes a hundred at a time. I have overwhelming fatigue, migraine like headaches, fevers, horrible joint pain everywhere, memory loss, skin ulcers, balance issues, and eye problems. The medications available for treatments are harsh, and prednisone is the only drug to bring me out of a bad flare.
I try to remain a positive person, but sometimes it’s very difficult. Thankfully, I have a beautiful family that takes great care of me and loves me the way I am.
To learn more about BD visit the American Behcet’s Disease Association.
Hope, Peace & Faith