Behcet's resources for new members

Welcome to any new members and hi to everyone else! :-)

I try to post this list every few weeks as new people join the group. I've had BD for 35+ years and have been helping other BDers since 1996 through online support groups, websites, books, and other resources. Even though my books are included on this list, there is NO pressure to buy anything -- some local libraries will try to get a copy for you if you ask. My main purpose in sharing info is pretty simple: I don't want anyone else to go through 17 years of symptoms like I did before I was finally diagnosed.

The list of resources is available here:

All the best,

Joanne Zeis

9 Replies

  • So good you are helping.i was diagnosed 4 years ago I'm 42 now and was to long with no help and was very unwell be for I got my children are unwell and it a hard job to get doctors to listen and believe this can happen to family's .my oldest daughter is getting some help she is at Birmingham Behcets Center .she as very bad face sores and so much more.She gets so unwell well and finds life hard to cope with like little 5year old girl gets so poorly high fever all the time she been into hospital 2 times with this.i have 6 children and I just wish doctors would got on board and help my kids this is happening to me and my children no matter how unlikely it is its happen .and i just wish I could take it all away from them but I can't .

  • Dawn, I'm so sorry to hear that Behcet's has hit your family so hard :-( Hugs for all of you.

  • Hi Dawn, I am 42 and also diagnosed (sort of) with Behcet's 4 years ago...I'm so sorry about your children also being unwell. My question is regarding your daughter's face sores. I also struggle with this as one of the main most frequent recurring symptom but have never found anything that effectively manages them. Have you had any luck with medications to help control her face sores? I would greatly appreciate any info you might have that would be helpful. Take care and all my best to you and your family.

  • thanks.. this is great...

  • Thank you for providing this information. Much appreciated!

  • Joanne,

    Do you find the you have any food sensitivities or allergies? Do you follow any particular type of diet ?

  • Hi LoveMy2Girls, I don't have any food sensitivities or allergies. Everyone's different, but in general I always feel better if I eat a lot of salad and vegetables/fruits and don't eat or drink too many things with sugar -- which is really tough because I've got a wicked sweet tooth and love chocolate and desserts!

    Some people with BD say they feel a lot better on a gluten-free diet. There's a debate going on with researchers about whether some BDers also have celiac disease, or whether there's some kind of link between BD and celiac disease -- but for now nothing's been proven.

    There's also an "anti-inflammatory" diet that some people like to try. You can see more info here:

  • Thank you Joanne! I have been reading a lot about the link between gluten and BD. I am thinking of trying an elimination diet and cutting it out to see how I feel. I too have a sweet tooth! I am soooo low on energy these days and it's very hard to keep up with my young girls and a full time teaching position. Thank goodness summer break is near! My Rhematologist thinks that lack of energy could be from the immunosuppresents I'm on and the prednisione, but I think a better diet could help. I also plan to fit in more exercise this summer once I'm not working. Hoping those things help. Also, If I were to purchase just one of your books, which do you think would be the most helpful? Thanks!

  • Hi, Thank you for posting these links. I'm 18 years old and have only this year been diagnosed with Behcets, however have been suffering from painful symptoms since i was 12. i was wondering if you know of any websites that perhaps offer more of an emotional support/ site where i could perhaps speak to people that suffer from behcets about some of the more emotional effects of the illness. i feel unable to 100% open up to family members and friends as they struggle to understand the illness. i feel talking about how hard it all is could also upset them and make them worry about me. i'm asking as you appear very knowledgeable about sites to visit. Thank you.

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