Behcet’s Syndrome Community

Meet, discuss & support other patients or families living with Behcet’s Syndrome. Contribute to topics, or just share what's on your mind

Are there any teens 14-18 here?

I want someone who is around my age(16) who can talk about BD at our age.

I'm slightly older than that, I was diagnosed a few years ago when I was 18. I started getting really sick when I was like 15 or 16. You can always talk to me if you want. Most people get it when they are older, but I understand what it is like to have it in high school.

I also experienced my onset in high school, and would be happy for you to get in touch, although be warned, I am now 28 years old!

I started having symptoms when I was 12, so I can relate. I'm now 26, but would be happy to talk to you. I have a brother who is 18, so I'm not totally out of touch with what high school was like!

I'm fifteen and my dr.'s at UNC Chapel Hill are 95% sure I have Behcet's.. It really sucks because lately I haven't been able to do what my friends do or play sports that I've always played..

I am glad to meet you Allie :)
yea... My doctors have yet to comfirm it's Behçets until I have one my sign.... But I am treated as if I did. What meds do you take???? How do they work for you????

Right now I am only on colchicine, but all that has done for me is take away the ulcers.. but my knees and hips continue to hurt and I still feel bad a lot, so I'm so ready to get on something that's gonna help me.. What about you?

I am on Methotrexate and Remicade ... I wa on Enbrel and Metho and I felt sooo great almost all the time! But then about a month ago I have two major Gen Ulcers in a 9 day span..... So the switch from Enbrel to Remicade.

Oh, did you have to give up doing things you liked beause of BD too?

I have had to give up almost everything I do with my friends... I have figured out who was my true friends through alllll of it though.... But I used to be a hiphop interpeter dancer.. But I couldn't really make it through a short practice.... And I play music.. But sometimes my joints in my fingures hurt to bad..... But I can still read my bible... And pray and build my relationship with my Saviour. Nothing is preventing that :):):)
but some days I do reallly good and can bike 32 miles...
But the best way to have a great day is to stay positive no matter how hard life gets just remember someone else has it worse. And that "There Is Always Hope" that is my moto for 2012.
I will be praying for you Allie <3

Awwe:') thank you!

How have your medications been? Like side effects and such

Hi, I am 18 and I was diagnosed with Behcets at 2 1/2yrs old. I have been on a lot of different medications. Now I am taking methotrexate and Simponi. I was taking Enbrel for years but then it stopped working. I have been in hospitals so much and always sick. When someone was sick with something mild I would get it 10 times worse. I know how you feel, it sucks to not be able to keep up or play the sport you want to, or used to play. Talk to me if you would like,I know how you feel.

Could you send mee your email? Or if u want I could give you mine brookwood so I could talk to you about it?

I realize your entries are dated a month ago but I can only hope that maybe your still checking in. I have a 12yr old daughter with BD She was diagnosed 2 yrs ago. She is interested in getting her ears pierced but worried it will trigger a flare. Does anyone know if this is true? We would greatly appreciate any information. Thanks

Aspynn, funny you should ask that. A a girl my pierced ears would always get infected. But this was prior to being diagnosed (although I did have symptoms mainly mouth ulcers at that stage). Saying that your daughter is probably on some kind of meds which I wasn't. I don't know if it would bring on a flare, I'd imagine it's the other way around, I'd she is unwell/run down the was will become infeted.
Although my ears were infected a lot during one stage, I haven't had problems with them since then (almost 15 years later), and I love my pierced ears!! So if you and she know the risks, and still want to, then go for it. You guys have the benefit for hindsight and can be more careful than I was. (bathe instead of shower to soak the ears, disinfect the earrings, make sure she moves them around etc, just the general ear care but more careful). If I stopped doing things because they sometimes cause me pain or discomfort I wouldn't get to enjoy anything!

Sydney83
Thank you....My daughter smiled at your answer! I don't want her to give up on living but being new to this we are both cautious. She is not currently on medication her recent flares have been mild but I agree with your sentiment and appreciate your responding.

I think that the problem is to make sure that your daughter won't have any infection after; behcet patients are more sentive to needles remember the pathergy test

I'm 17 & have Behcet's. I got sick when i was 13. I'd be more than happy to talk to you :)

Hi! I'm 18 years-old and Behcet syntoms appeared when i was mere a child (4 years-old) and i was not diagnosted until the age of 9 years- old as it's a really strange disease here in Argentina, where i live. Please feel free to talk to me if you need. I'll will olso like to talk with someone of my age that can understand how it feel to live with this desease.
Pd: sorry if i made any English grammar mistake but i'm still learning :)

Hi! Im 17, and was just diagnosed about a month ago.

Im 13 and i was diagnosed when i was 8

Hi, I'm 25 now but I was diagnosed when I was 18. Still trying tiger a handle on the stressers in my life. I was in the last semester of high school going into college. Know what it's like going through it.

I have a 15 year old daughter, recently self-diagnosed after 3 years of misdiagnoses. She also has anorexia nervosa as a consequence of this. I believe these were triggered by HPV and influenza vaccines.