Bechets diagnosis: I'm in my 60s and have had... - Behçet's UK

Behçet's UK
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Bechets diagnosis

Kdmel
Kdmel

I'm in my 60s and have had vaginal and mouth ulcers of and on since i was in my 20s with flare-ups about every spring through summer. I often get sorted in my scalp at the same time. I just had an MRI on my neck for spine issues and they found a lymph node in the cervical area that is 7cm by 9cm. I see my primary about this next week.

My gynecologist wants to do a biopsy of vaginal ulcers to determine. However, I am not of Turkish or middle eastern heritage, just Irish and Dutch.

How many of you are not of middle eastern heritage? I really think the researchers need to expand their categories to all heritages.

9 Replies
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Hi, from what I have read it could be all backgrounds but the condition has an association with the old silk route. I’m white, British and on testing for the gene did not have HLA B51. So mine is thought to be environmental factors rather than genetics so don’t be limited by anyone saying you need to show the gene association as well. Hope this helps, best wishes

I'm not, I'm Caucasian myself. My doctors weren't sure but when my symptoms kept popping up they had no choice but to diagnose me with bechets.

I'm 90% celtic/Anglo Saxon wirh Bechets so heritage is only relevant in that certain geographical areas seem to have more people with Behcets. It is a condition affecting every nation and race!

Hidden
Hidden

I'm Hispanic. It took 16 years to get diagnosed. I was stationed in South Korea when I served in the army. That's the only time I have been to the regions associated with the old silk trade route and bechets.

Me and my sister 🙋🏻‍♀️🙋🏻‍♀️

Behçet’s is the diagnosis that suits both of our diseases most. We don’t know our full family history so it’s very possible we have the right descendants and just don’t know. We both have Irish descent too and my sister has a mutated TRAPS gene which is linked to Irish originality. She lives in Barcelona and under a research unit where they think she (and probably me) have something yet undiscovered/ unamed. The thing is is how do you know fully unless your doctors are willing to investigate? Most won’t, unless like my sister, they have the money to research.

I was diagnosed with lupus for years too. Behçet’s is much more similar to the symptoms I have so I’m happy to go with it as a diagnosis as it means I receive treatment that’s more appropriate. At the end of the day it’s a name for a collection of symptoms. It helps me put it on paper to ensure I get PIP etc. So I can see why a diagnosis is important. I’ve also learned it is fluid and my change as time goes on 🤷🏻‍♀️. It wouldn’t surprise me if somewhere down the line mine changes again but it’s a good club to be in at the moment.

🖤🖤🖤

Hi ,

Hope you are having a good BD Day.

I am just counting down the days to my initial consultation at Liverpool CoE after having growing undiagnosed symptoms for over 11 years and bearable symptoms since late teens.

You question really rings bells with me, and points to difficulties in getting diagnosed with Behcets because most GPs and consultants are not well read on the illness.

So, many doctors have mentioned Behcets as an off hand comment to me for more than 6 years without following it up and I had not chased it because I was given that bad information by a consultant .

On one emergency hospital admission, my initial registrar said he thought I had BD and he wanted me tested for it, but when the consultant came to assess me I asked if I would be tested and he said I could not have Behcets because I was white. Others have said I cannot have it because I am a female . Because of this , whenever Behcets was suggested I did not think anything about it not being tested for because I am a white female.

It was only after a diagnosis of uveitis in April and another Behcets comment that I researched it , found this site, had these myths debunked and pushed for referral.

Tony, from BSS, sent me the details of ethnic background, and yes, although Behcets is more prevalent in silk road nations , the amount of white sufferers from across the world, and female ones, is still substantial and growing.

In my opinion, it is this inaccurate information, held by doctors, that means many of us are suffering for years without diagnosis , and causing us to suffer more damage because of the lack of help.

The only reason the ethnic pattern exists could well be more to do with lack of diagnosis of Behcets of people of a white background rather than that it being more common to people of the ethnic background from where the disease was originally discovered .

Hi

I am white British mainly Welsh with some Anglo Saxon mixed in. I am 49 and like you had suffered with ulcers since my teens then joint pains in my early thirties. BD had never been mentioned to me until eye involvement then testing positive HLA B51. Researching it has been confusing and frustrating . My consultant Rheumatologist suggested that a bacterial infection I contracted may have triggered it but that doesn't explain last symptoms.

I have also spoken to two other people diagnosed with BD who live locally to me they are both white British & we all live within a 10 mile radius of each other...very strange

Hope some of that helps

Meg. X

Hi, I am white British female 34 years old, the Intermediate uveitis started first when I was 23 and the vaginal ulcers at 28. It’s the Meningitis type headaches I really suffer with on a monthly basis.

Xx

I kooow what you mean. My daughter was diagnosed in 2013 and we are Of mixed race. However, including African America.

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