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HSD Vs hEDS
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- Опубліковано 15 лют 2023
- In this video, I discuss the differences between Hypermobility Spectrum Disorders (HSD) and Hypermobile Ehlers Danlos Syndrome (hEDS). What are your experiences with the conditions? Do you feel they are treated the same? Let me know in the comments section!
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Have you been diagnosed with HSD? How were you diagnosed? Do you feel like it's treated the same as hEDS? Let me know!
I got diagnosed with a diagnosis that doesn’t exist anymore. Benign they said. I meet the criteria for hEDS they just didn’t believe me when they looked at my mouth with my clear braces in saying indidnt have a narrow palate when I have photos from months before the treatment. I can stretch my skin 6cm in multiple places but they just lightly pinched one bony part of my hand and said it wasn’t. I have photos of me from months before an injury (currently in wheelchair) doing all 9 of the Beighton scale and had already been given a Beighton score of 9/9 by another rheumatologist but the is woman seemed convinced that I had fabricate for doctors these images because when I went to show her I can easily touch thumb to wrist she told me to stop and not hurt myself as if it would be hard to do her when she wanted to check my elbows has no qualms trying to forc me to raise my arms which really WAS causing a massive amount of pain due to constant injury to my shoulders. I felt written off because all they recommend is physio
@@ebonypatterson6714 I'm glad the term Benign Joint Hypermobility Syndrome doesn't exist anymore because the word benign makes it sound like it doesn't cause any problems. Sorry you had such a rough time with your diagnosis process. That sounds frustrating.
It is definitely not treated the same. I don't get a wheelchair fitting, I don't get insurance on physical therapy. I get sent to a psychiatrist instead. Why? Oh, because my arms aren't that long and my skin doesn't stretch very far.
@@astralb.2647 That's awful, I'm so sorry to hear that 😥 our healthcare system is broken
@@ebonypatterson6714what injuries have you got in your shoulders where I have lot of pain 24/7 I have heds Asperger's add fybromyalgia CFS so hard to get help getting genetic testing soon
I have an HSD diagnosis and it was incredibly difficult to get. When i finally got to meet with a geneticist, he told me that most of them don't even bother accepting appointments for HSD because there's so little that they can do. He told me, and I'll remember this quote for the rest of my life, "unfortunately, the only answer anyone really has right now is hurry up and suffer." I've been fighting myself for years about it but now I'm at the point where I'm going to start looking into disability. Even after a year of working with Physical Therapy, one or two missed appointments, and I'm locked to the bed or just aching all day. I'm 24 and i feep like I'm in my 70's.
I hear so many stories similar to your own, I wish things were different!
I have hEDS but have met one person with a diagnosis of Hsd and to be honest it does appear the two conditions are the same. I think medical professionals take the hEDS diagnosis more seriously but not always as some don't even acknowledge that EDS is even a medical condition which is ludicrous. Thanks again for another fantastic video. Your brining more awareness to our community of zebras! Xxx
I also feel like hEDS is taken more seriously. I remember being worried at my geneticist appointment that I might just get an HSD diagnosis. It sucks that anyone has to feel that way since they're supposed to be treated the same. I'm hoping the genes get discovered soon so that everyone, hEDS and HSD, can feel some validation.
I habe hEDS, but it was not only a clinical diagnosis. I also have a positive skin biopsy. It seams like a skin biopsy is more often performed in europe than in the US. I am from germany.
@@studithw.433can you tell more about the skin biopsy, who did it? Referred ! And what can they dx please and thanks
It’s such a relief to hear that you have a diagnosis and don’t dislocate often. I’m very worried that will stand in the way of being properly diagnosed. I sublux about as often as you, too. It’s interesting to view the condition as a spectrum where I might have a relatively mild version. Crossing my fingers that I get someone who both listens and knows what they’re talking about when I finally get evaluated 🤞🏻
I was recently diagnosed with HSD, we were seeking an hEDS diagnosis but he felt I couldn’t be diagnosed with hEDS as im missing a lot of the diagnosis criteria, so yeah, this video was actually pretty helpful so thank you! (Im 15, been looking for this since i was 7, which im glad we started so young as it gave more evidence for my diagnosis) my rheumatologist took me so seriously and even laughed at how bendy my hands were, he believes I have hEDS but couldn’t diagnose me. He’s giving me the exact same treatment and it’s nice to be recognised for once. Also means I don’t feel like I’m faking using my mobility aids (splints, cane and special shoes, however I’m looking into crutches and a wheelchair). I have some very sever symptoms but some very mild ones, im home educated due to chronic pain and fatigue but I don’t have a lot of the symptoms I would need for an hEDS diagnosis
I feel like the criteria is very strict, so many young people won't meet it. I'm glad your rheumatologist is good! It's possible in the future you might pass the criteria.
@@ehlersdanlosandi I’m hoping so as well, we reckon I’m gonna try too get a diagnosis as an adult
Saw a rheumatologist once a few years ago, said I was hyper mobile, to which I replied « I know ». Was referred to genetics, two years later and I’m still waiting. I found that they just don’t care. I’m 50 and I’ve had issues my hole life. I found out about hEDS and HDS by my own.
I've heard a lot of similar stories to yours. It makes me sad. Hopefully we see a lot of improvement in the next decade or two.
I was diagnosed with “EDS Spectrum Disorder”. I think my doctor wanted me to be able to say I have EDS so I can be taken seriously even though I don’t meet all the criteria for hEDS. I’m not sure why he didn’t just say I have HSD.
My doctors in the UK agree that hEDS and HSD are pretty much the same because of treatment being the same and symptoms being very similar and overlapping a lot.
That's good! I feel like most knowledgeable doctors here see it the same too, but there are quite a few still who call HSD benign joint hypermobility syndrome (BJHS), which is an older term for HSD, and because of the "benign" part of the name, think it's a benign condition that doesn't require any treatment. It's frustrating for those patients I'm sure.
@@ehlersdanlosandi Yeah, it took me over a year of constant doctor visits just to be referred to a pain specialist since I’m stuck in a limbo of not being considered disabled enough for disability but too ill to work without my body shutting down from the physical stress it is put in. And mind you I have a Fibromyalgia diagnosis as well as HSD. Very frustrating how casual they’re seen as.
I've been trying to figure out which one I have. I can bend all my fingers really far, touch the floor with straight knees, bend my feet and torso a full 180 degrees backwards, and even put both of my legs behind my head. I also "W" Sit. I didn't realise the criteria was so complicated.
About 90% of people with EDS have hEDS. If you don't have any major skin, cardiac, or vascular issues, the Hypermobile type is most likely the one!
Thank you for this video. I have been diagnosed with hEDS multiple times and HSD once. I get imposter syndrome and find it so hard to know which I have and what the difference even is.
You are so welcome!
Very informative. Thank you!
You're welcome!
Thank you for yet another informative video!
You're so welcome! I'm glad you're enjoying them! 😊
Incredible ❤
Her eyes and teeth look just like mine. I also have all the symptoms of hESD too. Wonder if they are connected.
There aren't any facial features associated with hEDS (there is with vEDS and some other connective tissue disorders), but having dental overcrowding is a feature! I've had 8 healthy teeth removed because there wasn't enough room and extensive orthodontic work. For some reason, my orthodontist at the time told me I could throw away my retainer after college (I had my braces removed in middle school), so unfortunately, my teeth moved a little after that. I'm considering something like Invisiline now.
What pain meds suit you thankyou
I personally don't take any prescription pain meds, I usually treat my pain on a case by case basis with a combination of heat therapy, compression, massage, topical CBD and/or menthol creams, rest, immobilization/bracing, and ibuprofen.
@@ehlersdanlosandi I no what you mean medication works different in us to and with asperger's
Sorry to be that guy, but you're uncommonly beautiful
Thank you for saying so!
@@ehlersdanlosandi my pleasure. You're partner is a lucky lucky man.
Don't worry, I live in England, just you really are so classically beautiful.
Forgive my forwardness.
@oliverbird6914 I'm the lucky one, he is truly an amazing man!
@@ehlersdanlosandi awwww that's lovely. Glad you found somebody . It's hard for people to understand eds. Can cause a lot of problems in relationships.
I still think he's the lucky one!!
Don't worry, not a nutter( well , sometimes this condition can send you a bit bananas can't it) but I said it as I saw it.
Good luck with everything. I'll keep up with your content tho. Good to know there's people dealing well with this
@@oliverbird6914FYI when you keep telling someone you're not a nutter or a weirdo it makes you sound like one. Next time just tell her the compliment. "You're beautiful" don't apologize after. Don't tell her your not a nutter.