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Conditions

Behcet's Syndrome

Behcet’s Syndrome is a rare disease that sees the blood vessels become inflamed. It’s more common, and more severe, in men than women and is far more prominent in Eastern countries. Someone with Behcet’s will most typically start noticing symptoms in their twenties, however the cause is unknown. The most common symptom of Behcet’s is the regular occurrence of ulcers in the mouth and on the genitals but further ailments can include inflammation of the eyes, skin, arteries, veins, joints, nervous and digestive systems and heart. There is no strict way of diagnosing Behcet’s, though Doctor’s will consider it an option if you report having at least three prolonged bouts of ulcers in the space of a year. If this is the case, then Behcet’s is most commonly pinpointed by ruling out other potential causes such as Herpes or Arthritis. Whilst there is no cure for Behcet’s Syndrome the symptoms can normally be kept on top of with various immunosuppressants which may take the form of tablets, a cream or an injection.

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i know a girl who is 20 years old diagnosed with behcets. doctors are planning to do a vaginal surgery removing the ulcers and grafting new skin. it's a long recovery. has anyone heard of it or had it done?





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Hi , my son is 14 . It has been one year and one week scone his First out break of mouth ulcers , in 1 year he has Had three mouth out breaks and two gential Out breaks . We have 1 doc who thinks it's behcets But everyone blows us off bc of his age . Anyone else get this , this young ? I saw one Of the girls said she was diagnosis at 16 . I feel Like we are getting the run around and no one Seems to care bc it's JUST ulcers . Bet they'd Care if their kid couldn't eat , or had trouble walking Bc of the discomfort





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I am 40 now but I was diagnosed at 14, with BD so I was as young as your son... With constant terrible ulcers in my mouth and down below I could hardly walk to embarrassed to tell anyone but couldn't hide the pain, had to get into bath with savlon in to go to toilet, after a week in hospital and tested for everything under the sun that a 14 yr old child shouldn't have been tested for... They couldn't figure out what was wrong only for a young doctor insisted it was BD that they realised that is what I have... Don't let them blow you off it happens as young as 14 in my case anyway.... The best of luck to your son....

Is it likely that 3 siblings can all have behcets, 1 twin diagnosed with severe symptoms including sight loss! Older sibling now being investigated and is likely to be diagnosed too the doctors have told him. I too have symptoms of frequent clusters of severely painful, large deep mouth ulcers, headaches and tireness, blood tests not revealed anything, please advise.





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hello, i am 34 years old mle, just got to know thast i have behcets syndrome. used to get mouth ulceres , been 10 years now. gott posterior eveitis lasrt year and again this year in another eye/. still treating chest infection, 2 more months then can start treating behcets/ this disease is terrible, got a lot of experience with almost 30+ doctors opinions. good luck fellas.





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If you’re worried….why not contact one of our doctors? You can call us on: 0121 224 8464 or email us today.

My daughter is 21 and was diagnosed with ulcerative coloites and I think she has behcets because she has soars in her vagina throat and colon. How can I trust the diagnosis if I see other symptoms that the doctor doesn't take into consideration





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Hi you should ask for a biopsy of the vaginal ulcers , not very pleasant but if the come back as vascular then it will confirm its behcets . My daughters has this and she is 20 and I know how you will be feeling .

After reading up on it, I am confident that I have Behçet's disease. I went into the hospital with 30 or more mouth sores and large vaginal ulcers, my joints had swollen so badly that I couldn't walk, I had a pimple - like rash covering my face and chest. My vision was blurring in and out. It lasted for three miserable days. They ran a ton of blood work but nothing looked too crazy so the Dr's want to wait and see. .. how can I get a quicker diagnosis?





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I forgot to add that I am a 39 year old white female.

Sorry this is a little late, but a biopsy of my vaginal ulcer by a dermatologist helped greatly with my diagnosis

I am 46 and was diagnosed with Bahcet's over 20 years ago. I was undiagnosed for quite a few years before during this time my GP prescribed various anti-biotics and topical steroids. Flair-ups consisted of mouth,throat, stomach, nasal and genital ulceration. Since my diagnoses I have been taking Colchicine, which at first kept the ulcers at bay but eventually my flair-up frequency and severity increased and I had to take aural steroids. About 2 years ago I was diagnosed with severe degeneration to the cervical region of my spine, so bad that I will need surgery to repair it. During consultation at a pain clinic I was told that the premature degeneration is likely to have been caused by long term use of steroids. I feel so low at the moment as the specialist I saw last week informed me that treatment has not moved on and it's either continue with the Cochicine and soluble steroid as a mouth wash or take something stronger with greater side effects. If anyone has any advice on how to treat this condition with minimal to no side effect I would love to hear from you.





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Hi, I'm Samantha and I was diagnosed with behcets when I was 16, I'm now 21 and Instill get really bad flareups. The best proscribed medication I've taken was Humira and prednisone. Can anybody suggest another helpful medication I can possibly bring up to my health doctor? Please and thanks you!





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Hi I will be going on Remecade this week which was preceeded by a permanent coarse of prednisone and methyltrexate.

I live in the UK and have been diagnosed with behcets about 3years ago. I suffer chronic pain in my joints , ulcers in my mouth and vagina. I get severe headaches and my eye sight has got worse and I have macular degeneration. I'm taking colicine which keeps the ulcers at bay and a lot of other medication to help with the other problems. I am now waiting for my daughter to be diagnosed. Has anyone any other help to in keeping comfortable with this





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I'm 42, live in Sydney (unusually I believe for this condition am Anglo Saxon) and started getting oral ulcers (about 6-12 at a time) from the age of 4. I've had atrocious genital ulcers- at one time non stop for over 2 years, skin an joint issues but no uveitis or cerebral effects thank heavens. Tried many meds including colchicine, prednisone, Imuran and probably others I can't recall. Methotrexate is working for me, although I still get the oral ulcers which to be honest I can deal with as I don't know any different! Been to two great Professors in Sydney that really know their stuff in this area. Life is pretty good now!





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Hi, I'm also in Sydney and am "under suspicion" for Behçet's. Weekly visits to GP, blood tests ok, abnormal MRI on brain, neck injury due to whiplash, chronic fatigue, constant ulcers, fever and chills, IBS, more stuff but eyes ok.....seen several specialists. Am seeing an Assoc. Prof at Concord Hospital, who is great but worried he won't diagnose me but another appointment next week as flare ups are constant now and with young kids, life is difficult. Just wondering who you are seeing....all the best, I'm 45 years young!

Hi Helen, First diagnosed by Prof Ronald Penny at St St Vincents. Under the care of Prof Denis Wakefield (prince of wales). He is terrific and an expert in the field. best wishes and recovery. Xlouise.





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It looks like no one else has asked this question, so please fill in the rest of your details below.





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