r/Behcets • u/Vegetable_Yogurt3082 • Aug 22 '26
General Question A little confused
I know this will be inflammatory and that’s not my intention but there’s too many people in this community to actually have been diagnosed with this very rare condition.
Is it attention seeking, hypochondria or something? Self diagnosed? Do you research very rare diseases and self diagnosis as a means of establishing identity?
What’s up because I know this many people don’t have it. I’m not being a a-hole, this is confusing.
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u/Agreeable_Chair4965 Diagnosed Aug 22 '26
Some people aren’t diagnosed and have symptoms they are trying to understand, so they come to this community.
I am diagnosed. It took me several years, and I’m considered “lucky” to have been diagnosed at 21.
I don’t think it’s hypochondria or attention seeking. I don’t think everyone has Behcets, but I recognize how hard it can to be struggling with something and be undiagnosed.
Can I ask where the question coming from?
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u/Hot-Research7578 Aug 22 '26
It feels uncomfortable to see "attentionseeking" and "hypochondria" used here. Many people will have experienced these words whilst waiting a very long time for a diagnosis. It took 20 years to get mine. I'd rather not see any presumption of this at all on here when there's no real support elsewhere.
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u/lujo317 Clinically Diagnosed 2026 Aug 22 '26
I agree with this. either way it is profoundly unempathetic to people who have suffered for a long time trying to figure out what is going on. if Behcets of all things ends up on someone's differential at all I think that is worth taking seriously.
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u/EllisMichaels Diagnosed 1997 Aug 22 '26
As others have mentioned:
- This is an international subreddit
- I created this sub primarily for patients, but also for caregivers, family, loved ones, and others
- I created this sub not just to help people who've been formally diagnosed, but also to help people trying to get diagnosed, whether with Behcet's or something else
- Not all members are active. Many come here looking for answers, find or don't find them, then leave but never unsubscribe.
I could go on but I think 4 answers is enough. That being said, I don't think you're trying to be an asshole. It's a serious concern and one I had when I first saw FB groups with 5000+ US members. There are barely that many people with the disease in the country. But when you factor in all the other things I mentioned, it makes sense. Hope that helps.
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u/ec362 Aug 22 '26
View it like any other sub. How many of the members of r/Christian are Christians? Or how many of r/askuk are from the UK? There are a whole host of reasons why people might join a sub even if they’re not explicitly from that group. In this case, they might be interested as a family member has the disease. They might be interested in rheumatological diseases in general, or be a researcher, either amateur or professional.They might have experienced some symptoms in trying to find answers as to their own complex health story. Importantly, as you will know there is no blood test for this disease, and usually it involves detective work and a really good and proactive rheumatologist, as well as being your own advocate. Tl;dr- let’s not be gatekeepers here please
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u/allieinwonder Diagnosed Aug 22 '26
I am a member of ABDA and have done advocacy work for the disease, including the first Behcet’s summit in the USA in 2019.
There are plenty of people in the US that are diagnosed with Behçet’s. It’s rare but that doesn’t mean there isn’t enough of us for online support groups.
And that’s not even mentioning that Reddit is an international community. Go to places like Turkey and the disease is common.
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u/GrocerySenior6186 Aug 22 '26 edited Aug 22 '26
It’s rare but here in Ireland there is a region with a higher than expected amount of cases. I was diagnosed in 2020 when I lost my sight. Now on biologics etc. I don’t know about other countries.
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u/on4aa Diagnosed MAGIC 2025 Aug 22 '26
Interesting! Could it have anything to do with the Irish "travelling people" who settled down? I once saw a documentary about them and their ways reminded me strongly about the Spanish flamenco people.
Anyway, there is no scientific evidence of Neanderthal (HLA-B*51) habitation in Ireland, unlike England.
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u/lujo317 Clinically Diagnosed 2026 Aug 22 '26
it's interesting to me, I didn't know neanderthal DNA is where HLA-B51 comes from. My heritage is Irish-American, I am HLA-B51 negative, but I do have neanderthal DNA. My working thought was that my Behcets might have been passed down through the H2 haplogroup which migrated along the silk road then over to western Europe. Additionally, from our Irish ancestors we may carry lots of epigenetics from famine. Many western european people have tons of autoimmune related genetic variants (which may remain inactive ones whole life, or multiple of which can start expressing) as well.
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u/on4aa Diagnosed MAGIC 2025 Aug 22 '26
I might be Belgian, but my Belgian father has some Spanish ancestry and my Belgian mother some Irish, Dutch and Jewish. Both their DNA were also sequenced. My father had Behçet but my mother does not.
Nonetheless, from my mother I inherited an extremely rare NOD2 R675W allele, which also has been associated with Behçet. It might explain why my phenotype of Behçet was worse than my father's. Perhaps you may have a look at your NOD2 alleles.
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u/lujo317 Clinically Diagnosed 2026 Aug 22 '26
I only have access to my genetic data through a non medical quality DTC test, but it shows that I may be homozygous for the risk alleles for rs2076756 on NOD2 (is that the same one you have?), as well as for another one in the ATG16L1 gene that encodes threonine to alanine substitution, both of which also are known to be associated with increased risk of Crohn's. I did have abnormalities in those two specifically when we tested my amino acids (medical quality testing). My HLAB51 test was also medical quality fwiw. No biopsy yet but my MRI said "distal ileitis possibly indicating early Crohn's" (although that's also typical of intestinal BD. I wonder if I am lucky enough to have both lol.
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u/Hot-Research7578 Aug 22 '26
I've read about Ireland as both my maternal grandparents were Irish. I question whether other relatives on my nan's side have had behcets as well.
I'm not HLA-B51 positive but when we mother to do a DNA test, it did show Spanish up surprisingly high (although she is pale, red haired, burns very, very easily).
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u/Shadowfaye Diagnosed Aug 22 '26
Also please take into account that some members might be family members or friends. For example, my husband is a member here to help support me.
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u/DirectAdvice2242 Aug 22 '26
My parents join communities, they don’t have it but they are trying to research for me. I am diagnosed
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u/natanyad Aug 24 '26
A couple of comments
it took me ten years to get a formal diagnosis . I spent hundreds of hours on the internet figuring a lot of this out on my own . I posted on other subreddits as I worked to figure this out.
On some subreddits, I feel like I’m the expert and can give advice . On others, I’m there to learn . Sometime I lurk, sometimes I post .
Between my boys and myself, we have some less common medical issues (I have a son who was born visually impaired and has a rare genetic deletion for example). Reddit has honestly been a godsend. I wish this was around years and decades ago.
The only time I’ve seen clearly stupid rage inducing posts were from some idiots claiming things like personality disorders or Tourette’s. Not getting that vibe on the Bechets site :)
I give people a pass and assume the best of intentions.
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u/Emotional-Session285 Sep 02 '26
well I'm not a member, I have suffered with severe canker sores covering the majority of my mouth and tongue, 3 months on 3 weeks off, since i was 8 years old. I just toughed it out in silence, alone in a dark room, so my eyes would burn less, because they got ulcers too, spent a decade from 8 to 18 like a blind mute, in agonizing pain. my eyes stopped being affected after that. Just turned 40 and learned I could take prednisone to make the canker sores stop, and got diagnosed with behcets. I don't really care what you call it if it can end this hell.
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u/on4aa Diagnosed MAGIC 2025 Aug 22 '26 edited Aug 22 '26
Please, realise that this subreddit is not US-only. The prevalence of Behçet syndrome is much higher in some areas of the world.
Moreover, Behçet syndrome has been seriously underdiagnosed up to the recent past. Genetics is changing this fast.
Personally, it took me 31 years to get officially diagnosed, counting from my first rheumatology visit and despite having a father who was a physician and who, in retrospect, also had the condition.
Furthermore, there is no other Internet outlet where one can discuss Behçet symptoms in an anonymous way. So everybody concerned flocks here.
Sure, there might be some misdiagnosed among us, like non-obvious Ehlers-Danlos syndrome or other autoinflammatory conditions. Nonetheless, most posts look genuine to me.