Please take a moment to introduce yourself to the community. Everyone here has something to share about Behcet’s Syndrome. For the discussion boards, we ask that you keep your full name and location private.
Heidi here, 39 yrs. old, mom of 5.
Wife of one fantastic man!
Diagnosed with Behcets in 2004 after 20 years of symptoms. Still cannot find the right mix of meds to manage this disease. Am always looking for what meds work for whom and can contribute what has worked or not for me. Looking for decent doctors in Florida that know something about Behcets and know a few in Colorado that do too.
Hi I’m Randy and I have Behcets. I was diagnosed in 1995 and am still here. 
My husband was DX in Aug '05 after having been searching for an answer for about 1-1/2 yrs. We were lucky for it to be such a short time as the stories go.
I’m 30, married, and just gave birth to my first son in March. I was diagnosed only about a year ago and really didn’t show major symptoms untill couple of months previous to that. At that time I was hospitalized for two weeks. I’ve had seven surgeries in the past year, most of which are GI related. After the birth of my son I was back in the hospital for another two weeks.
I have all the typical symptoms…seizures, arthrits, ivitis, oral, vulvar, and GI ulcers. I’m stuck with an ileostomy for the second time.
I take 15mg of prednisone, Trilptal (for seizures) 300mg in the morning 900mg at night. Cant’ forget the Zoloft too 75mg. I will soon be adding prenatal vitamins and folic acid to the list because we long for another child.
I’ve had a little over a year to deal with my illness and If you ask me I’m dealing with life as best as I can. My husband and family are the most compassionate people you will ever meet.
I live in the MidWest and was approved for Social Security on my first try last October. (my little one collects too) Just thought I’d throw that out there for those that in the process of applying or thinking about it.
-KellyOstlund
Milwaukee, WI
Hello all you with Behcets
I Live in Oregon just outside of Portland.I have had behcets now for over 10 years.I am a wife & mother of 3 grown daughter and step mom to 3 grown sons and grand mother to over 18 grand children which only 5 are biologically mine.I have just became foster mom to 2 of my youngest daughters friend children they are 2 and 8 and do day care for the 3 sister who is 4 mths old…Life at my house is filled with laughter and fun.I spend allot of time outside planting flowers in the garden and my husband does all the vegetables.I turned 50 this year and never thought in a million years a would be starting over being mom to younglings but as we all know we never know what tomorrow will bring do we.So I enjoy every day as if tomorrow might not come and make sure every day all my loved ones know how much they mean to me and how much I love them.And yes I have behcets but behects does not have me!!!
I hope to get to know all of you because being a stay at home mom who is sick and with young kids can be over whelming at times.I have a wonderful kind set of doctors who have made sure I get the best treatments and meds I needs to manage the behcets.
Enough of me I hope to hear more for you all so we can all be good friends.
Love to you all Debbie alias Blueysangl
Hi! I came to have a look following your email! My partner has Behcet’s and now has some permenet blind spots in his eyes but for the moment is fit and well and off all medication - long may it continue! Saira:o)
Have had Behcets for 20 plus years. Doing well for past few years thankfully.
Hi everyone! I am Kim and I am from Wisconsin (Madison area - KELLY! I am so excited there is another Badger out there!!!).
I was diagnosed in 2001 when I was hospitalized with at cerebral venous thrombosis to the left transverse sinus (read: blood clot in brain). I have had symptoms since I was 18 - I am now 37. I also suffer with ulcerative colitis, recurrent uveitis, chronic ulcers (genital and nasal are the worst for me), chronic headaches and FATIGUE (that is my worst symptom). Prior to my CVT I had aseptic meningitis and several bouts of uveitis one on top of another along with active UC which all lead to my diagnosis.
My disease is a series of remissions and flares. The flares tend to act up seasonally with spring being hardest for me. I am currently only experiencing fatigue and some mild heaches. KNOCK ON WOOD!! LOL!!
Currently I am taking methotrexate (injections), folic acid, remicade (infusion every 6 weeks - trying to make it every 4), and prednisone injections as needed. My disease does well on azithioprine, but my stomach does not so I am back on the methotrex - it made my hair get really thin last time however…
I am looking forward to getting to know you!
Kim
Hi everyone! I am Kim and I am from Wisconsin (Madison area - KELLY! I am so excited there is another Badger out there!!!).
I was diagnosed in 2001 when I was hospitalized with at cerebral venous thrombosis to the left transverse sinus (read: blood clot in brain). I have had symptoms since I was 18 - I am now 37. I also suffer with ulcerative colitis, recurrent uveitis, chronic ulcers (genital and nasal are the worst for me), chronic headaches and FATIGUE (that is my worst symptom). Prior to my CVT I had aseptic meningitis and several bouts of uveitis one on top of another along with active UC which all lead to my diagnosis.
My disease is a series of remissions and flares. The flares tend to act up seasonally with spring being hardest for me. I am currently only experiencing fatigue and some mild heaches. KNOCK ON WOOD!! LOL!!
Currently I am taking methotrexate (injections), folic acid, remicade (infusion every 6 weeks - trying to make it every 4), and prednisone injections as needed. My disease does well on azithioprine, but my stomach does not so I am back on the methotrex - it made my hair get really thin last time however…
I am looking forward to getting to know you!
Kim
I am interested in healing. I would like to connect with others who are interested in learning new ways to heal their bodies (and minds and hearts) I am interested in how this disease has affected fertility of other members.
I was diagnosed with BD in 2004 while pregnant with my second son. My Rhumy is still trying to get my meds right, but I’m getting there - slowly.
I’ve been delving into the world of BD since diagnosis, but try not to read too much as it scares me! But I’d welcome the support of the group!
Hello everyone! I am Mike and I have Behcets.I just want to check out the community here.No wait,I’m a good guy! Please come back out of your houses!..I’d like to lend support when I can and receive it as well.
I have been diagnosed with BD for about 7 years now but had symptoms for most of my life. I am 25 years old.
I’m looking for other people who understand what it’s like to live with Behcet’s Disease. I’m hoping to make some new friends and gain some support. I live in Alaska and not many people here have even heard of it. Not even many of the doctors.
Hi… just looking in
I have had Behcet’s Disease since I was 7 years old although I did not receive a proper diagnosis until 2002. I am really fighting to be a Mom (5 year old and 8 year old daughters) wife, friend and strong spirit while trying to find my way to a remission of my symptoms. I am currently in limbo as the many medications I have tried have not induced remission and some of these medications have left me with permanent side effects. However, I am not giving up…