Allison Rain
Region: US
Thursday 12 June 2025 16:06:16 GMT
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Screechypoo :
looking back it started when I was a toddler. now I'm worried about my daughter she's showing all the signs
2025-06-12 19:36:09
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Eeeeeevvaaaaa :
My symptoms started as a young kid. My mom and brothers also have it.
2025-06-12 17:40:38
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Bela (Unni) :
symptoms from birth, diagnosed at 15. eds, pots, mcas, gastro issues, plus many more comorbidities
2025-06-12 21:58:34
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dgkop69 :
it's not rare; it's underdiagnosed.
2025-06-16 22:26:11
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Justine Oleksandra :
was never officially diagnosed but when I was little, the tendons in my knees would slip and lock in a bent position, and was constantly dizzy when getting up. Now, with my hip osteoarthritis pain, I hadn't been able to work out amd Now my entire body is inflamed because Now the tendons have to do the work the muscles used to do. constant pain!
2025-06-15 16:37:42
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Jaclyn Paige :
As a small child.
2025-06-12 19:15:27
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Keely Mae :
Thank you for saying this. I have a few hypermobile joints but have 0 problems with my joints. I have histamine issues but because I was living in mold. People are so quick to be like hEDS!
2025-06-15 13:46:55
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✨ Lilly ✨ :
I wasn’t diagnosed until I was 30. Literally 2 days after I turned 30. It got suddenly worse when I was 24. I had always been fatigued, constantly spraining things, needed surgery(12) but my very first symptom was something my mom told me about starting as a baby i dislocated my elbows constantly. To the point the ER taught my parents how to relocate them so they didn’t have to come in.
2025-06-12 22:26:19
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luminescentdreamweaver :
Ok it’s similar to the supposed “rise” in autistic and adhd diagnosis. It maybe didn’t seem so prevalent but that wasn’t due to it not being a thing it’s because people who were different in any way were ostracized from society and locked away making it seemingly rare. The diagnosis rate for Ehlers Danlos Syndrome’s is rising because more people are becoming aware and are able to see themselves in what’s being shown/said. More people becoming aware is a good thing, it’s spreading awareness and I don’t think that’s bad.
2025-06-15 03:07:24
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Bri :
im wondering if I have it. ive always been "double jointed" i used to show my friends how I can pop out my thumb and turn my arm all the way around. I was adopted so im not sure about genetics.
2025-06-16 17:32:58
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MelissaPerry9131 :
Pretty sure my symptoms started around 8yo. I’ve got hEDS, POTS, gastroparesis, and thoracic outlet syndrome
2025-06-18 00:32:07
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eme_braelyn :
Symptoms started at 6 but got drastically worse after my jaw surgery at 17- that’s when I became bedbound.
2025-07-20 14:19:15
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Alex Lee :
My joint symptoms from memory probably started around 12, but I had chronic gastrointestinal issues from birth. I just got diagnosed at 18 and have daily dislocations and subluxations. It and hip dysplasia have taken my sport from me and have made life so hard. I’ve also spent my entire life pushing through pain and thinking all my symptoms of joint issues, stomach issues, and neurological issues were normal. There’s also a possibility that I have a rarer type because of my skin involvement and hip dysplasia, but I’m the only one in the family with EDS. My geneticist interrogated my mom and me about my entire life and she was skeptical, but as we went through everything she was like “ok you totally have some type of EDS.” It’s so hard to get diagnosed when people see it as “trendy.” Like no, I can’t walk some days and i feel like a cooked noodle 😭
2025-06-14 07:00:53
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mia_whyaab :
Your live broadcast is great, click the invitation link on my homepage to join our team, send me a private message, we support you
2025-06-16 06:07:46
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Athena :
I’ve had symptoms my whole life but the pain symptoms really started a couple years ago and I got diagnosed with hEDS (suspected MCAS) a couple weeks ago. The big ones for me as a kid were allergic reactions to anything and everything, stomach issues, and joint issues (carpal tunnel as a middle schooler and chronic crepitus in my shoulders as an elementary schooler). And I have exercise induced panic attacks which my dr thinks couldn’t be POTS among other things
2025-06-14 03:33:54
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