Adytum
Region: US
Thursday 24 September 2026 02:38:47 GMT
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🗝️ ☽🌑☾ 🗝️ (🆘🇺🇸🇮🇪🇺🇦) :
My last PCP told me that hEDS is a medically insignificant diagnosis, that it’s the new fibromyalgia. A red flag take for both diagnoses
2026-09-24 19:24:00
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Chauntel :
blood is connective tissue
2026-09-24 09:22:42
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Laura 🦓♾️🐙🏳️🌈🍉 :
No wonder GLP1s work so well for us.
2026-09-24 05:12:03
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A🍉 :
WAIT I WAS IN THIS STUDY!! I had no idea their findings were out now!
2026-09-24 23:41:26
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Angela Kaplan :
by any chance did all the hEDS patients have high platelets?
2026-09-28 01:57:27
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hippy 🐆🎱🍒⛓️🪩 :
hEDS def has an immune component to it I’ve always had the immune system of a Victorian child and a huge chunk of us have an autoimmune condition, which I also have lol
2026-09-27 13:41:40
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Dirt Apples 🫶🏼 :
It makes a lot of sense. So many people with autoimmune disorders (like me) have hypermobility. I don’t qualify for an hEDS diagnosis, but I have ankylosing spondylitis with hypermobility. I swear it’s all a lot of the same disease with different labels based on what problems are worse than others. So much overlap and everyone is different.
2026-09-28 02:34:24
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NotaDeb :
I’ve had to be monitored by oncology three times because of my markers for inflammation. I don’t think this is the cause of hEDS but rather a result of the damage caused by hEDS
2026-09-28 02:23:55
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Tamara :
I started a low dose of tirzepatide to help with inflammation. It’s helped my hypermobility, suspected auto-immune and adhd. It’s noticeably better on a very small dose.
2026-09-25 00:33:51
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user963257994215 :
I bet endo is connected too
2026-09-24 12:36:35
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Miranda📎 :
Wonder if that’s why I’ve had intermittently positive ANA’s. I have an immunodeficiency as well.
2026-09-24 17:46:03
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Faith Dinger :
My doctor prescribed Zyrtec to help inflammation...Then I find out you can actually have an allergic reaction to Zyrtec if you take it too often and long. 😮💨 Ya girl is tired.
2026-09-24 08:58:02
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TeekTalks :
My doctor tells me it's not even worth seeking a diagnosis because there's nothing that can be done and I wouldn't want that diagnosis anyway. It's so frustrating
2026-09-24 21:05:35
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Ornery1 :
Hi thanks. My son and I both are dealing with this. There doesn’t seem to be much info on boys with hEDS?
2026-09-24 04:20:37
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clumsy_ninja_85 :
Anyone that understands even the basics of the scientific method, knows you first must define the problem. That's what studies like this do. Then they have to test larger groups, check for discrepancies, check for other reasons why these proteins could be coming back abnormal, check demographics. It is only when we fully understand what the problem is that we can then research ways to help it. There may be variables that we are unaware of right now that can only be found in larger population samples. I understand the frustration of wanting a cure, or something to help, but we won't get that until we finally get through this step
2026-09-25 11:00:28
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Thepeoplesprincess :
The same pathways that Covid impacts BTW. No wonder my HEDS became significant after infection.
2026-09-26 21:55:12
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JESUS AVELAR ✝︎ :
They need to start taking men seriously too for EDS I feel like we are so dismissed because we’re male and more muscular .. it’s so annoying
2026-09-26 03:44:04
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Bobbi Sue ❤ :
This makes a lot of sense, my immune system is so weak 🥺 I keep getting UTIs and was just in the icu with sepsis due to it. Also had heart issues and had to have a cardiac ablation 😬 anyone else experienced this? I'm 32. Formally diagnosed with hEDS but my joints are super inflamed too. I'm miserable.
2026-09-24 19:54:15
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cinnamontoastkunt :
This makes a lot of sense. When I get a virus it just vibes in my system for months creating inflammation but it’s like my specific immune system barely kicks on and the nonspecific and complement systems just do a mediocre job and wreak havoc instead
2026-09-24 14:42:29
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audrey.sienna :
I think people are misinterpreting this study. It doesn’t mean that heds is not genetic. And it’s still a problem w connective tissue.
2026-09-25 16:07:18
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amber ⋆˚࿔ :
every doctor i ask about it says to ask a different doctor. I ONLY HAVE SO MANY DOCTORS.
2026-09-25 19:55:26
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sawyer ᖭི༏ᖫྀ :
yeah it’s trauma!!!! that’s why we are all in painnnn
2026-09-24 05:37:47
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leah🕊 :
ive been told for 5 years what my condition is only to be told (not by my doctors but tiktok) that it may be something completely different. insane
2026-09-24 04:25:20
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Pcubb :
“Just connective tissue” is crazy because connective tissue is soooooo much of our body
2026-09-26 17:59:26
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Amphibia :
It is a connective tissue disorder still because blood IS a connective tissue
2026-09-24 19:24:41
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