Life in Pain

Unfortunately I have Behcets as well and most Doctors are not that knowledgeable about it as it is so rare here in the United States. It took one special doctor in Pulmonolgy to finally fit the pieces together for me and I was diagnosed after 15-20 years of sickness no one could pin point the cause of. It has also affected my lungs and I have had to have a total hysterectomy as well.. Please let Jimmy know that I thought I was all alone until I found the American Behcets Disease Association on line or ABDA.

I was so very excited to hear your story from the radio broadcast. My name is Sandy McElgunn, I'm the President of the "American Behcet's Disease Association" of the United States. My story starts at age 3 yrs. old when I began getting weekly mouth ulcers. My 3rd grade year I missed the full year of school because of a mystery illness, my symptoms were mouth ulcers (misdiagnosed as fever blisters), headaches, body aches, fevers, stomach upset & rashes. Every ten years of my life my symptoms became more agressive and flares were closer together. By my 30's my doctor & I knew something more than me just having the flu was going on and we began a major search. He ordered test after test, at first he thought I had Lupus, then MS. We were on the right track, he knew it was auto immune something. At 43 yrs. old he found the right diagnosis, "Behcet's" ! That's when I found the ABDA and called their Hot-line number for help with my many questions & concerns I had about this very rare disease! I became invoved with the ABDA in 2001, first volunteering as a Hot-line operator myself. I have since served on the ABDA Board as Hot-line Coordinator, Vice President and now as President. The ABDA's mission is to support our patients, families & caregivers with information about this unheard of disease. We find them knowledgeable doctors that treat other Behcet's patients, give them names of many support groups that they can connect with, and help patients & their families in many other areas. The ABDA's other missions are to educate the whole medical community about this rare disease & how to properly diagnose a behcet's patient. We also partner up with other associations like NORD & Rare Disease Communities, to help each other in the education of rare diseases & to lobby for better laws to help many of the other rare unheard of diseases. I remain a positive person even though my Behcet's stays very active, flaring almost weekly. I have great faith in my awesome Lord, who hears my daily prayers & gives me the strength to carry on with my life. I have a fantastic husband that supports & cares for me daily. I love him so much, because he loves me even though I suffer daily from my Behcet's and several other health conditions! I am very fortunate to have a loving & supportive family, was blessed with one child, my beautiful daughter Addie, a kind and loving son-in-law Anthony & our beautiful Grandson, Noah. I have another family also, my caring Behcet's family that I have learned to love so much. I have made so many precious friendships since my diagnosis, and have so much suport & understanding from all these beautiful people! I still answer the Hot-line along with my volunteer position of President of the ABDA. I love working for the ABDA, it gives me a purpose to get out of my bed, and keeps me positive... I never know what blessings the day will bring. I love when I can help a depressed patient feel better by just listening. My story & stories of the many positive moments that come my way could go on forever. You inspired me Jimmy to be strong & positive, your story was my blessing for today. Would love to talk to you someday, my e-mail is on our web site.

wow! Thanks for giving a portrait of Behcets. I was especially moved by your fear of coming face to face with your "predestined" future, and your subsequent ability to accept your future. I too have a job I love and have to take great amounts of time off from. Thank you for reminding me that nothing is forever, that I always overcome.