Can my Husband Pass the hEDS Diagnostic Criteria?

[@ehlersdanlosandi]

My husband is such a good sport! What other types of videos would you like to see?

[@suelirussipitta4267]

Greetings from Brazil !!! Your vídeos are sooooooooooooo welcome and helpful. I have watched them a zillion times. I took this exact test u showed today and told my doctor - this is what I have - she described my symptoms in details!!!!! I am 56 yo and scored 7 out of 9.I have been “freshly “ diagnosed with heds. It helped my doctor ( the one who embraced my cause, not the ones who operated on me) come to an answer to why i have had 5 hiatal hernias operated on the last 3 years ( last surgery a sub-total gastrectomy) No doctors/surgeons even knew eds existed. Unfortunately i Will have a total gastrectomy by july. I am just waiting for my genética test resulta to come. Nonetheless I am só greatful to you !!! U changed my life. Lots of kisses !!!!

[@ehlersdanlosandi]

I'm so glad you've found these videos helpful! That's why I do this, to help other people on their journey and to bring more awareness to hEDS since it's so misunderstood. Thank you so much for watching and your kind words! It means the world to me!

[@bethanyspence4156]

That’s was really interesting! Big thanks to your hubby for participating too!

[@ehlersdanlosandi]

He's the best!

[@charlottestandage2765]

I got a 7/9 on the beighton scale, and scored 6/12 on part A, and got a point for part B because my identical twin sister was diagnosed with hEDS before I was. My twin sister scored 6/9 on the beighton scale and scored 7/12 on part A. So although we are identical we still scored slightly differently on this. Thank you so much, this was really interesting! X

[@ehlersdanlosandi]

That's very interesting about you and your sister! It's always surprising to me how different family members are, but especially twins.

[@oliverbird6914]

Are you familiar with the RCCCX theory? That people with certain collagen " defects" are attracted to each other

[@ehlersdanlosandi]

I haven't heard! But it would make sense, since my husband is quite bendy for a man his age that doesn't stretch.

[@oliverbird6914]

@@ehlersdanlosandi it's fascinating. Why would nature want people like us? Well as you'll know, we tend to have amazing intuition, empathy, often have genius traits, quite literally. These collagen defects tend to throw up some belters of humans. We sense stuff that others don't etc. So there is a reason for this sexual attraction

[@ehlersdanlosandi]

@oliverbird6914 that's very interesting!

[@tankgrrl07]

Where did the full test come from? I tried to see my dr about being hEDS and she only did the flexibility part and ignored everything else you’ve gone through. I have history of other issues that she glossed over and ignored which seem to be covered in the other parts of this test.

[@ehlersdanlosandi]

Here's the link to the diagnostic checklist, it's from the Ehlers-Danlos Society's website: www.ehlers-danlos.com/heds-diagnostic-checklist/

[@Dembemydoodle]

That’s fantastic you don’t diagnose yourself off some chick on KZbin dear one. The ONLY person to diagnose you is a GENETICIST and you know what? They use a heck of a lot more that this test and you know they have something called experience. Because tons and tons of people are hypermobile. Good luck. Don’t get your medical diagnosis from random people who are not medical professionals.

[@ebonypatterson6714]

I got 9/9 Beighton score, 8/12 (possibly 10) on criterion 2A, 3/3 for criterion 2C, 3/3 for criteria 3 though I DO have obviously (like 10cm in some places) stretchy skin but don’t have the clEDS gene. I have issues with my skin, heart, eyes, teeth, pelvic prolapse, entire GI tract etc The ONLY thing I couldn’t meet was family history because I came from a home with sexual abuse and domestic violence we don’t talk or see eachother anymore and my mother refused to get me checked out when I was sick probably because she and grandma were used to just ignoring a lot of obviously unusual symptoms. So because they are not diagnosed I get labelled with benign joint hypermobility. Bullshit. I asked why I don’t meet hEDS criteria and they said we don’t call hyoermobility EDS anymore and apparently they don’t use the 2017 criteria? But won’t tell me what they do use? I’m being told the only reason I have pain is because my muscles are weak not because of any actual damage to joints or tissue when I hurt myself. I have massive biceps. I can do pull ups. I guarantee I am more muscular and physically stronger than the physios repeatedly telling me this. My fingers don’t bend backwards all the way when I try to use a chopping knife because I haven’t got enough muscle to stabilise them they’re just faulty collagen fingers and I need splints because I’ve been playing guitar, drawing and doing hand strength exercises my entire life and feel like I’m just doing more damage at this point but no one listens

[@ehlersdanlosandi]

If you can afford to do so, please seek a second opinion! Getting the right diagnosis is really important. They say HSD and hEDS are supposed to be treated the same, but I don't believe that's true in practice. I would try for a geneticist if possible. It sounds like you've had some genetic testing, double check that that both classical-like and classical EDS were on the panel. Most connective tissue panels don't actually include classical-like because it's such an expensive test for some reason. It's so weird that they said the 2017 criteria isn't used anymore...unless I've missed something major, it's still the standard. If you don't have any genetics clinics accepting new patients, I've heard of a geneticist in Florida I think that does telehealth evaluations. I'm pretty sure his name is Dr. Atwal. If you're in the States, that is!

[@ebonypatterson6714]

@@ehlersdanlosandi Thanky ou I am trying but the local geneticists won’t accept any self referrals and my GP won’t refer to another rheumatologist I am going to fight to see Dr Mittal in London though that’s hours and hours of travelling I really feel like I’ve been fobbed off and it was so odd they would not specify what criteria they use and why they gave me an outdated label like benign joint hypermobility. Like I literally had he criteria on my phone and a slideshow of all the evidence showing I check off every box but she looked in my mouth and decided my palate wasn’t narrow WHEN I HAD ORTHODONTIC APPLIANCE IN MY MOUTH at the time and ignored all the photos or the fact I’ve had 4 extractions and need 2 more because of crowding and other dental issues. She said I didn’t have stretchy skin after pinching the back of my hand without asking or warning me but like I said I can grab handfuls of my skin elsewhere on my body imgur.com/a/zjyQdiS Like it made me think I was just fat for years same with the stretch marks at 7 years old. Thanks for the heads up about the classical like gene I have had genetic testing done that apparent came back negative but I’ll double check to see if that gene was counted because as you can see def stretchy

[@ebonypatterson6714]

@@ehlersdanlosandi I am in the U.K. it’s so hard to see specialist here even though healthcare is free. I have so many issues with my chest/ribcage/diaphragm/GERD I will check for TNXB and CYP21A2 as I paid for full sequencing

[@ebonypatterson6714]

@@ehlersdanlosandi I paid for a review with an online geneticist and they said ai have a lot of variants of unknown significance in ZNF469 and FBN1 but that doesn’t necessarily mean anything

[@outsidethewall8488]

I am a pianist and have been doing Aerial Pole fitness for 8 months so I'd say I have above average grip strength for someone my size (5"2 woman) and pretty good upper body and core strength thanks to Pole. My pain has improved but I still get pain in all my joints including my fingers. Strength helps with pain but a lack of strength is not the only explanation for pain nor is strength sufficient to prevent pain. Sorry you went through this.

[@Psychomech5]

I haven’t watched all this yet but what did he mean about the hip trick he used to do?

[@ehlersdanlosandi]

He used to bring his foot onto his lap (kind of like a butterfly stretch) and be able to clean the bottom of his boots. It's hard for a lot of women to do, and it's definitely not common for men.

[@Psychomech5]

@@ehlersdanlosandiLike when someone sits cross-legged, only with one of his legs like that and the other standing? Am I interpreting that correctly?

[@ehlersdanlosandi]

@@Psychomech5 Yes!

[@oliverbird6914]

This was great btw

[@ehlersdanlosandi]

Thank you! I might do another in the future with other people 😊