Let's get chatting!: Our community is... - Partners for Behc...

Partners for Behcet's

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Let's get chatting!

Zebra profile image
ZebraPartners for Behcet's
7 Replies

Our community is now getting active. How about introducing yourself and your involvement with Behcet's plus any questions here. Let's get this group active.

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Zebra profile image
Zebra
Partners for Behcet's
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7 Replies
Kibbles profile image
Kibbles

Hi My name is Kim and I've been a carer for a Behcets sufferer since 1997

Zebra profile image
ZebraPartners for Behcet's

Welcome Kim. How are you finding it? You must have a lot of experience to share. Yell too if we can help you.

vanningurl1 profile image
vanningurl1

Hi. My name is Leslie. My husband has not officially been diagnosed with Bechets. His symptoms are somewhat a mystery to his doctors, and he has been to plenty of them. In all the research we have done, Bechets seems to be the autoimmune process that encompasses his symptoms. His doctors have suggested that he has Bechets but they seem to be unsure. I am here to learn how to be a caregiver, and what if anything i can do to ease his pain. Any suggestions for a diet that may reduce his flare ups or any tips at all are appreciated. I don' want him to go through this alone.

Zebra profile image
ZebraPartners for Behcet's

It is great he has you. Some have found that going gluten free helps reduce any stomach symptoms so this could be worth exploring with his doctors. The main thing is to try to reduce stress wherever possible as this is a major trigger for the disease.

Janieg510 profile image
Janieg510

Some people have suggested taking probiotics daily to reduce inflammation in the gut which can transfer to other areas. I started them a month ago so it's too soon to tell for me. I went gluten free for about 3 weeks and didn't see any reduction in symptoms so I stopped.

Pimms profile image
Pimms

Hi folks. I'm Pimms and my husband has been recently diagnosed with Neuro-Behçets although it has taken us 4 years to finally get the diagnosis. We have 2 small children and it's hard at times but we find our way just about. Lovely to 'meet' you all x

tusKadero1 profile image
tusKadero1

Hi, my name is Heather, I live in the US, I'm almost 40 years old, and I am new to this site and the whole world of Behçet's. I see that this original post is 3years old so that worries me that maybe people are not as in touch with each other as I was hoping. I have been having crazy symptoms for about 20 years that up until last week my Dr and I had previously thought unrelated. However after seeing a new OB/GYN last week it seems that the seemingly unrelated symptoms are ALL adding up to BD. I'm scared. I'm virtually alone. And BD is SO extremely rare un the United States that even my Drs seem lost. I have been referred to a Rheumatologist and go there 3 days. My main symptoms are mouth ulcers (usually 10 or more at a time, currently I count 34 on my inner lips, tongue, insides of cheeks and even gums), large genital sores, diarrhea at times, severe redness of eyes along with irritation and blurriness that comes and goes, fatigue, pain in wrists, ankles, and back, and chronic cough or built up phlegm. All of these symptoms have come and gone over the years but right now I have them all which is maybe why someone finally added it up to BD. I'm sorry this is so long, I just haven't had anyone to relate too and no one seems to know how I feel. Employers eventually don't believe me after being sick so often and I've lost jobs and friends from having to stay home. I'm going to proceed to read anything and EVERYTHING on here in hopes of some answers! Thanks for "listening".I hope to hear from someone, ANYONE, soon!