Behcet’s Syndrome Community

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Buongiorno a tutti qualcuno di voi e in contatto con l'associazione Simba Italia per i malati di behcet io nn riesco a contattarli.Qualcuno può aiutarmi. Grazie

Please Sponsor Me & Raise Money For Behçet's Syndrome


Hi everyone!

I am going to be hiking the Hollywood Hills in Los Angeles, not only for a personal accomplishment to myself, but also for the incredible Behçet's Syndrome Society. I've watched my sister live with Behçet's for years now and I guess I've just had enough with the lack of awareness and understanding towards it. So I decided this was also a perfect opportunity to raise money towards the cause.



For those of you unfamiliar with Behçet's I have left a video link below where I explained the whole reason for the hike and what Behçet's is really all about, despite what you may read on the internet.

It would mean so much if you donated as much as you could, even if you can't, passing this page and/or the video onto other people would be a huge step in making Behçets known to more people, so the world can understand it better and we can really start making a change for the sufferers.

Thanks guys!

- Chiara .x

Hair loss

I wanted to ask if someone knows about losing hair with cortisone, I am using medrol and I am losing a lot... unfortunately I have Behcet.

Notice: This text content has been translated automatically by a third-party service.

Before I started taking medication, my hair began to break and fall out. The doctors said it was probably a combination of stress and having multiple infections back to back. I was finally growing back and becoming less fragile, but then my Behcet's flared again, and it started to thin and fall out. I know it's an issue with a lot of autoimmune disorders, and that the medications themselves are often harsh on the system. My hair became so thin I couldn't put it up anymore, and I used to have the opposite problem where I'd have to go in and have it thinned in a salon!


Buongiorno a tutti vorrei chiedere se anche voi vi sentite sempre stanchi io ci sono giorni che fatico a fare tutto sono in terapia da poco con azatioprina per il behcet speriamo che passa in fretta questo periodo


Dear Cleo

I was very sorry to hear that your sister is not well with Behcets

Please have a look on the Behcets Rare Connect map of the world which gives details of where people who live with Behcets are located.

There are at least five patients in Montreal that are registered on the map.

I will ask Rob from Eurordis if he will email of those 5 people directly to ask them which doctors treat them. Hopefully they will be able to give you some info or help with Doctors and the disease in Canada

There is some good information in English about the disease. The docs are here

I have also checked a list of Doctors that belong to the international society for Behçet's disease and there is one listed in Canada in Toronto. He is Dr A Ztouma of Uhn research
His email address is

Perhaps you email him and ask if he is aware of any doctor that may be able to help your sister.

Please let us know what happens and if we can help then please ask.

The Behcets community has a wealth of experience of living with this disease.

I wish you and you sister well.

Dear Richard,
Thank you so much for your answer!! Thank you for the wealth of information and for your help in locating a Doctor in Montréal. We will surely email Dr Ztouma in hopes of getting a referral. My sister Paula has dealt with meningitis, encephilitis, uveitis, (she has lost some eyesight and hearing) she has had heart, lung and kidney problems since childhood, chronic diarrhea, she is unable to eat most foods so very very thin. She has seen many doctors and specialists who are unable to give us a definitive diagnosis. A neurologist thought it might be Behcets because of the mouth and genital ulcers, uveitis, skin nodules and poor coordination but no definitive diagnosis, hence no treatment. Right now my sister is struggling with severe symptoms as our Mom recently passed away of cancer. We are of Italian descent, very close family so with the extreme sorrow and stress, Paula's whole body seems to be giving out, her eyes, kidneys, bowels, lungs, heart problems, severe joint pain, severe fatigue, osteoporosis (fractured ribs) and daily diarrhea. She is extremely discouraged and so thin. I will share your answer with her, Again, thank you so much for your help, in bringing us hope and courage to continue on with our search.


HBLA51 positive various health problems including mouth ulcers.

Unfortunately I found out I had the disease only for three months, but it is more than twelve years that it started after having dysentery. Headache, prostatitis, acid reflux, various kidney problems, testicular problems with prostate problem inflamed eyes several times, swollen lymph nodes. excruciating leg pain, strong fatigue problems with thyroid nodules with all these problems.

At least three or four times, I had mouth and tongue ulcers, and sometimes inflammation after. Every time I went to the hospital or a specialist, they told me that there was nothing and that it was just stress. Some months ago, I met a rheumatologist and I explained all these problems and told me it could be Behcet's disease. Pathergy test was positive and I tested positive for HBLA51. Now, I'm being treated with immunosuppressive and medrol but unfortunately symptoms persist and I know that it takes time, I'd like to meet and talk with someone who had these symptoms and treatment before.

Bechets and me

How it affected me

« Hi I'm 44yrs old I live in London in the U.K. I am blind suffer from seizures, have osteoporosis and vitamin deficiency in vitamin A, B, D, K. I am also confined to a wheelchair due to spinal & neurological involvement caused by the Bechets. I was diagnosed with Bechets when I was 30 after I was rushed into hospital after losing the sight in both my eyes caused by the Bechets, prior to this I had suffered from continuous Mouth and Genital ulcers with severe skin involvement all of which was ignored by my G.P.

Until I lost my sight I was a busy medical secretary raising 3 children under the age of 5 which was blamed for the exhaustion I was suffering from, and although I took all the medication and medical advice my sight has never returned and never will I rely on my pc to read my emails etc. My husband has been amazing and has supported me every step of the way unfortunately he had to give up work to become my carer as suddenly losing my sight caused so many difficulties with everyday living and raising a family.

I am currently taking methotrexate, prednisone, gabapentin, mycophenolate, adalat retard, Epilim, omeprazole, ranitidine, tramadol, morphine, & morphine syrup, codeine, sando-k, chalachew, colchicine, in the past I have tried taking azathioprine, and infliximab which didn't agree with me and caused me to have seizures. There are a few other drugs that I'm on but we'll be here all day if I list them all, the main thing I've learned since being ill is to make the good days count as they're few and far between.

Despite all the negative things that my illnesses cause I'm a strong believer that things can always be worse and that I'm lucky to have been blessed with 3 wonderful children and an awesome Husband my glass is half full.

p.s. please excuse the spelling my computer doesn't recognise the names of the medications I'm on and it doesn't punctuate that well either :)


Hi Cheryl

Thanks for posting your story. Even in adversity you are an amazing lady and very positive. I think it is the only way to be.

Do you belong to the UK Behcet Society and will you or your husband be able to attend the annual meeting in London in October this year?

Do you attend the London Behcets Clinic at The Royal London?

I live in Southampton

Best Regards