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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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My daughter has had constant ulcers in her mouth for 5 months now. She has also experienced intense joint and abdominal pain as well. We have taken her to 3 different doctors and are thinking this is what she has. She is only 9. It breaks my heart!!





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I was diagnosed with Behcet's disease in 2010 when I was 14 years old. It began with severe mouth ulcers and all the other symptoms shortly followed. However, this site says that there is a regular occurrence in mouth ulcers for Behcet's sufferers but I have not had a flare up for 4 years now. No more ulcers since that dreaded time in 2010. Is this also common? Fingers crossed it will carry on this way!





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I was recently diagnosed with behcets, I Am 21 years old and have had 5 outbreaks in 8 months. Each outbreak seems to be worse each time. It starts rapidly in the same spots every time. Mouth genitals mouth and hands. It's feels at first as if I'm being stabbed with thousands of needles and over the course of a few days my mouth is so bad I cannot even drink milk without being in extreme agony. I cannot walk because of the sores on my genitals. They are bigger than a 50 cent coin piece each and ooze blood and puss. It almost looks like a brown recluse bit me on my junk and my finger and mouth. Once it peaks my mouth hurts so bad I cannot talk. My mouth will start bleeding from my teeth rubbing against my tounge. Vicodin doesn't help at all. Nothing does. Has anyone ever expierenced it this bad? I just want it all to end. Even steroids aren't helping.





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My son was diagnosed at age 19 with Behcets. Severe mouth ulcers, groin ulcers and on his face. Monthly infusions of Remicade have seen to be the best treatment with occasional prednisone in between.

my daughter was diagnosed at 11 after over a year of suffering with ulceration and arthritis ,,we have moved to a hotter country to help with the joint pain she hasn't had a bad flare up for a few years but currently id suffering one .im distraught seeing her like this ..she is 18





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I am 51 yrs old, I was diagnosed with Bechets 2 yrs ago after 8 yrs of severe Iritis, joint pain, mouth and vaginal ulcers. I suffer irritable bowel, have high blood pressure, underactive thyroid. I get very regular chest pain. The worse discomfort when I get a flare up, I get severe head and neck ache and my eyes feel as though they are under severe pressure. I now know this is due to inflamation of the meninges/cranial, it is scary when it occurs.





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My son (14 in the US ) got his diagnosis today . At first I felt relived to have a name , now I'm feeling scared





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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 it's me (Joy) i am waiting on the answer to the above question. I guess i don't know how to get it. can you help me?

My daughter has had severe ulcers. She has been in the hospital over them. At no time did they operate. They do leave a scar. The ulcers will heal from the bottom up. They are called Apthous ulcers or Lipschutz ulcers. Not sure if I spelled that right??? The first time she had they were going to do surgery until we were referred to specialty OBGYN and diagnosed with the correct Ulcers. We wereliterally ready to go in to the O.R. It is NOT an infection to drain. They will heal with steroids. Pain meds are needed as they are extremely painful. Ice helps as well as Sitz baths. BTW Myself and my sister have Behcets as well. We use prednisone, lortab, lidocain gel, and now Colchicine. We all have scarring down there but nothing major and it has not caused any problems just cosmetic.

My daughter has had severe ulcers. She has been in the hospital over them. At no time did they operate. They do leave a scar. The ulcers will heal from the bottom up. They are called Apthous ulcers or Lipschutz ulcers. Not sure if I spelled that right??? The first time she had they were going to do surgery until we were referred to specialty OBGYN and diagnosed with the correct Ulcers. We wereliterally ready to go in to the O.R. It is NOT an infection to drain. They will heal with steroids. Pain meds are needed as they are extremely painful. Ice helps as well as Sitz baths. BTW Myself and my sister have Behcets as well. We use prednisone, lortab, lidocain gel, and now Colchicine. We all have scarring down there but nothing major and it has not caused any problems just cosmetic.

This sounds dreadful! Would advise another opinion. I am a 38 year old female and have had Behcets since late twenties. I have almost constant ulcers in mouth and below (treated primarily - when just can't bear it any more - through taking steroids). Never have I heard of surgery - and can't see the point as wouldn't prevent more ulcers appearing. Seriously - sounds barbaric.

Apologies - by 'this is dreadful' - I am referring to the suggestion of surgery not the answer by Heather which is really useful/valuable and the kind of info worth taking to any gp appointments (who often know little about what Behcets is or how to treat it).

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....

Hi, I'm 20 and have been suffering from severe ulcers since a similar age and have only just been diagnosed. My issue was exactly the same, I wasn't taken seriously enough and passed from doctor to doctor. All I can suggest is making an appointment as soon as you have both mouth and genital ulcers as once they had ruled out the obvious herpes etc they were forced to look at beçhets.

my sister was diagnosed at 13. We had to drive her to a nearby university's medical center and the diagnosis took over a year. It's just so rare that someone gets it at that age...doctors are reluctant to recognize it.

My first genital ulceration happened when I was 11. I, too, became dehydrated and emaciated because I wouldn't eat or drink so I wouldn't have to suffer passing the urine. I couldn't walk either--the entirety of my labia minora were ulcerated. The Drs. insisted it was the worst case of herpes they had ever seen (even though all Herpes swabs are negative and I was never sexually active nor abused...as accused). I finally received an accurate diagnosis at 22 years old. I'm glad to hear how much has changed in the 20 years since my first symptoms--that Behcet's is becoming better known in the medical world. I didn't date for those 11 years--until after university--because the Gyno told me that I had Herpes and would have to tell every boyfriend I ever have that I have this and will give it to him. I hope your son knows he has done nothing wrong, and it will get better!

My daughter was just officially diagnosed at age 16. She had her first onset of symptoms with Vaginal Ulcers at age 14. She has had other symptoms of BD before that. I have BD as well as my sister. I started having issues in my teens as well. We are just now finally getting answers to this mystery monster plaguing the girls in our family. Get another DR. I have had many over the years who have not believed or not known what to do and we have suffered unfairly. Go and see a DR who will listen and get answers for you. My daughter is being seen by her own Childrens Rheumatologist & Neurologist at a Childrens Hospital. They have the expertise and skills to treat and diagnose rare diseases.

Alison ... This is a big concern for me as well . Although he is only 14 right now . I know he will One day hopefully want to have a healthy (Safe) sex life . I'm scared this disease is going To be something ppl are going to gossip about And possibly keep him fr forming deeper relationships Bc of the fear of having to disclose this info . On the upside , maybe he will wait for someone He knows loves him and it won't be a problem For them . I wonder of it's not easier for women to Disclose than Men . Your thoughts ???

Hi, i was diagnosed with behcets when i was 18 i had similar symptoms to your son from the age of about 12 but they severly exacerbated as i became older, i urge you to get a refferal to a consultant as behcets can be a very deabilitating illness! I ended up developing chronic uveitis of the eye which led to partial blindness in my right eye and a blood clot in my left calf (17) and (18) the drs at my local hospital were USELESS and if i had been to a qualified dr from the start id still have my full sight! I believe in england the best consultant is at Addenbrookes in cambridge

Hi my daughter is eight and been ill now since 4 yrs and yes Bechets. Has consent mouth ulcers - occasional below, migraines, blurred vision, aching joints - onset of extreme pain , stomach pains, occasional chest pains and fatigue lots of fatigue!!!! I can only watch, give out the medicine and feel proud of how she try's to cope bad hold her when she can't. Truly awful illness .

My son started to be ill at 5. He was diagnosed at 9 - it took them ages to figure out what it was. Go and see other Dr's. I ended up seeing at least 30!! My son used to have at least 20 in his mouth, on his lips etc and couldn't eat or drink anything. Always ended up in hospital on a drip.. Don't let anyone fob you off!!

I am now 30 but was first diagnosed at 15 and it was a horrible outbreak, ulcers in my mouth were so bad I couldnt swallow. The ulcer down below was so bad that when I would go pee and it would touch it I was in screaming pain that I will never forget. I had to be catherized for 2 weeks so the area could have time to dry and heal. This was the worst 3 weeks of my life and i'm thankful I have not had these problems ever since. I do fear that since I have not had issues in 15 years with sores that they will eventually come back. Has anyone had any experience with being in remission for this many years and then it comes back?

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.





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