author.km_hofman
Region: US
Wednesday 01 July 2026 13:24:41 GMT
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Cat-astrophic :
I have EDS and my thumbs don't touch my wrists but I hit every other mark on the beighton scale so... idk why it's their first question when not all of us can do that!
2026-07-02 06:12:51
770
SassLyssa :
I’m so sick of having to advocate for myself.
2026-07-01 19:59:46
4161
Miss Applejax :
I’m begging you for a template
2026-07-02 00:27:52
1637
gablog-erin💙 :
I knew I had it for long long time. I just got diagnosed hEDS
2026-07-31 20:31:00
0
no :
Thank you I’m gonna do this
2026-07-31 00:06:53
0
Bismuth_Moon :
A rheumatologist told me "You score an 8 on the Beighton but you need 9 to qualify as hypermobile." I pointed out to him that 9 is the MAX score on the Beighton and adults qualify with a 5. He added the diagnosis to my chart. Next, geneticist! I also have POTS
2026-07-01 22:36:54
4477
Lindsay :
I also tore my labrum in my hip doing every day activities, and it was the physical therapist who did all the flex tests and told me I likely had EDS but that there was nothing to do about it. Have been debating even mentioning it to PCP because I didn't want to be dismissed.
2026-07-31 15:28:47
0
Leslie 🖤🦇📚 :
what all was in your Google doc? I need an example or template please 🙏
2026-07-31 03:38:46
0
arq. debora ch :
I don't meet the criteria measured by the Beighton scale, nor do I have all the signs of someone with Ehlers-Danlos syndrome. They didn't want to diagnose me, so I went to get genetic testing. Guess what. Not only do I have Ehlers Danlos Syndrome, I have the VASCULAR TYPE.
2026-07-03 16:51:50
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Mim's_Exotics :
I diagnosed myself and mum. Confirmed
2026-07-30 20:55:21
0
T4gues :
My problem is finding a doctor that has heard of Ehlers/POTS/MCAS. How did you find a specialist?
2026-07-02 02:40:27
187
KG :
Can we see like a blank template of like what the Google doc looks like?
2026-07-02 01:23:30
564
brandi :
I tore my left labrum somehow and when I finally got to the surgeon he asked me when it happened. His jaw hit the floor when I told him I didn’t know but it started hurting like a year prior. He told me “this is a pitchers injury and they know the SECOND it happens because it’s so painful.” I’m not a pitcher. I’m not even left handed… so yeah, I’m trying to get a formal diagnosis.
2026-07-01 16:36:09
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Phoenixx 🌈🪬🧿💚 :
are you a Virgo?
2026-07-01 14:40:59
153
Krysta Gale 🦋 :
i have a whole ass binder i bring to every appt. and if one more doctor tells me not to self diagnose after I am correct im going to scream 🙄 i have an appointment with a new rheumatologist in September that is apparently very open to diagnosing eds, so *hopefully* I'll finally get somewhere with her
2026-07-01 18:24:24
250
🇨🇦 Dani :
I can’t touch my thumb to my wrist but have been diagnosed with hEDS. Doctors are only just starting to learn about it.
2026-07-02 03:33:56
60
Rebecca :
honestly, I've been made fun of by doctors for years. but honestly in the end I'm always right. we know our bodies, and we have to continuously advocate for what we know is right.
2026-07-26 16:48:52
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🏳️⚧️ trans rights 🏳️⚧️ :
thought i had adhd, got diagnosed with severe combined adhd, thought i had pots, got diagnosed with pots, thought i had heds, got diagnosed with heds, thought i had lipedema, got diagnosed with lipedema. thought i had endometriosis at 14 years old, took 19 years but of course i was right :) i am 100% sure i have mcas but the allergist i saw refused to test for it and just said "if taking antihistamines everyday helps just keep doing that🤷"
2026-07-04 19:55:44
44
thequeerplantparent :
I genuinely feel like I have to be my own PCP. Definitely going to try that symptom organization doc
2026-07-01 17:06:56
54
Sandra Michelle | Girl Mom 🎀 :
My Dr said it doesn’t matter because there’s no cure and it doesn’t change anything. He said I should just stay hydrated, exercise and get more support because I have caregiver syndrome 😅😅 like what?!
2026-07-02 21:10:17
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Mrs k :
I'm from the UK we have ZERO chance of getting a diagnosis here, I just went to my GP for a bleeding varicose vein and the GP legit asked me " so what do you want me to do about it" !!!
2026-07-02 05:29:53
14
ry :
i am self diagnosed with hEDS, adhd, and austism. not currently seeking a diagnosis, but i don’t care if people don’t believe me and i don’t care if people disagree with self diagnosis 🤷♀️
2026-07-02 02:17:19
61
Cinnabuns75🆘🇺🇸🖕🧊 :
I diagnosed my POTS before I got confirmation. It’s almost as if we know our own bodies and experiences better than anyone else. I’m not ready to tackle getting the EDS diagnosis yet. It’s exhausting
2026-07-01 20:40:19
33
MightyMo| DJ :
My thumb doesn’t touch my wrist but my joints semi dislocate
2026-07-02 04:08:38
45
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