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
Sandy McElgunn
Sandy, my story is similar.. As a child I had horrible migraine, awful mouth ulcers, Raynaud’s Phenomenon, flolliculitis, etc. after developing severe genital ulceration, repeated fever, erythema nodosum, arthritis, and eye ulcers, I actively sought help. It took a total of almost 5 years for a proper diagnosis. Since that time I have also been diagnosed with Fibromyalgia. These conditions apparently go hand in hand often times. It has completely changed my life. Some good news on the forefront for BD sufferers- the meds being used now for Rheumatoid Arthritis, etc. may help one patients. I have been taking a potent cocktail of Cellcept, Humira injections and Prednisone- which seems to be lessening the quantity and severity of my BD flare ups. It has however made my migraine worse. People should talk to their Docs about med combination therapy. BTW I manned the Hotline for several years in the early 90′s ! Good luck. It’s a tough job. Hats off to you!
. Terri Gury
Have you tried Plaquenil. My doc is starting me on it soon.
It is so sad how many mouth soars u get! I have retinal bleeds, rhem arthritis, memory loss, fatigue, migraines, balance problems and ulcers. And have gained 60 lbs from steroid’s. Its not fun but still have my sight!
Greetings, Sandy…I am a 41 yo f in Wisconsin struggling with trying to get my dr/s motivated in assisting me in finding out what the cause of my symtoms are. I actually feel like a hypochondriac when I bring up my symptoms. It started a year ago after an extremely emotionally traumatic event involving my young dtr and began with a single ulcer type area on back of my neck. Following that, I began to get them on my face such as eyebrows where I lost hair, balance issues, eye ‘wobble’, other ulcer areas that manifest after an injection which I frequently get for migraines and in the past few months, mouth sores(about 6 in 3 months-I can remember only 1 other one I’ve had in my entire life prior). The ones that manifest after injections have occured on both deltoids and begin as tiny red bumps that then ulcerate…after researching I discovered this could almost be considered a positve pathergy….yes? This is not an all inclusive list but covers majority. How do I get the help I need..I just switched dr’s from a primary phys to an internist in hopes of improving my chances but got the blow off from her as well:( HELP!!!
Hi Tammy! I have forwarded your message to Sandy at the American Behcet’s Disease Association: http://www.behcets.com/site/pp.asp?c=bhJIJSOCJrH&b=260521 This organization has a section where you can learn more about Behcet’s with or without a diagnosis. Being your own advocate can be exhausting! If you need further assistance in researching organizations that may be of assistance to you in finding the necessary help you deserve – please feel free to send us a message by clicking “Contact us” at the bottom of this web-page: http://globalgenes.org/who-we-are-2/
All our best
- The Global Genes Team
hallo Sandy.
hope you will be fine,i have behcet but i saw as in the forties becomes quitly.