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

9 thoughts on “American Behcet’s Disease Association President Sandy McElgunn also a Behcet’s Patient”

  1. salah hijazi says:

    hallo Sandy.
    hope you will be fine,i have behcet but i saw as in the forties becomes quitly.

  2. tammy clyse says:

    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!!!

  3. Hi Tammy! I have forwarded your message to Sandy at the American Behcet’s Disease Association: 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: /who-we-are-2/

    All our best

    – The Global Genes Team

  4. angie petersen says:

    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!

  5. Bonnie Lhuillier says:

    Have you tried Plaquenil. My doc is starting me on it soon.

  6. Terri Gury says:

    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

  7. megandrawdy says:

    I have had symptoms of Behcets disease since April 2011 an my doctor has not said I have behcets but I’ve had joint pain ,mouth sores, genital sores.

  8. kory noble says:

    Try being a veteran who was misdiagnosed for 14 years, suffered through countless outbreaks while suffering from PTSD in a combat zone while they gave me prednisone to treat the symptoms… in a combat zone.

    My temper tantrums were insane, my psychotic breaks were monumental, and as a result, this last year, I went fully catatonic at times – hospitalized for days due to my eyes swelling shut, unable to eat or sleep due to the intense pains caused by oral lesions that went down my throat and into my stomach.

    Compounding the problem is that my medical care comes from the VA, and lacking knowledge on how disabling the disease is, they refuse to see the disease as anything other than a ‘acne’ disease.

    I hate my life, I hate this disease, I’m sick of losing out on being able to participate in life and I hate myself for fighting for a country that can’t even take care of her own.

    This place disgusts me, and this disease that I have to suffer through for the rest of my life just puts that proverbial ‘cherry’ on top of the pie.

    I don’t want sympathy, I want answers, and I want them now.

    The sooner someone tells the Veteran Affairs association that anyone who is diagnosed with this disease should be immediately medically retired so as to not put the lives of other servicemembers at risk due to the severely emotionally draining drawbacks of the treatment of symptoms with extremely powerful steroids.

    Someone needs to raise the red flag here and get this looked at.

    I’m glad I didn’t snap or hurt anyone, I couldn’t of done it without the patience I learned through patient obedience to the law of Nature and good order of conduct… but anyone else under the same amount of duress and pain would probably have snapped given the circumstances.

    I’ve lost everything because of this disease – it is my hope that I can provide a story that prevents this from happening ever again.

    – thank you for providing such an excellent online source of knowledge – I’ll keep reading stories and hope that a cure is found someday soon.

  9. Abigail says:

    Thanks for these posts! I’m sorry that other people have struggled with doctors and diagnoses, but it’s so encouraging to know I’m not alone.

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