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Пікірлер
@Fareesa-u9g 21 сағат бұрын
I have it
@Theo-vb6pg 2 күн бұрын
Me too !! But mine can bend worse 😅
@KryWinterbird 3 күн бұрын
I injured my left arm at work in 2021 and was not receptive to physical therapy/rehab. I was cooking for 9 years, prep cook/line cook and handled orders and reorganizing the fridges and moving heavy boxes and I worked out and lifted heavy things before I got injured as well. Regularly. Now I’ve got a prolapsed uterus, rectocele and I have mild degenerative changes in my c5-7 and pretty much constant pain and headaches. Haven’t worked since 2022, workers comp wanted me in retail sales of some variety which I didn’t feel would work either. My mom was passing so I took care of her during that phase of her illness and that kinda got in the way of the extended vocational rehab program from workers comp and they let it finish out, I got a payout for having a permanent stable injury with no treatment at 27 years old. Then in October of 2022 was when I got my hEDS diagnosis. I’m fucking lost on a career option but I’m also just lost in life and feeling useless now. 😭😩
@ehlersdanlosandi 3 күн бұрын
@KryWinterbird I'm so sorry you're feeling that way. Everyone has a purpose in life! Sometimes that purpose isn't found in a career, but if you're looking to find a new one, you could try starting with one of those free online career assessment tools - they can help give you guidance on where your strengths and skills are at and give you recommendations.
@meloniewainwright864 11 күн бұрын
My Aunt was just diagnosed. I go this week to the genetics dr. You story is so much like mine
@ehlersdanlosandi 11 күн бұрын
@@meloniewainwright864 I hope your appointment goes well!
@elisaissoslay 11 күн бұрын
I have REALLY extream hitchhikers thumb
@urbanhawk2886 14 күн бұрын
I have classical like EDS after getting my genetics results and going through everything to make sure I got the right diagnosis. Its weird though as I still don't feel I entirely fit into the cLEDS bracket. Most part everything here is right and I do have the majority of things here listed. I do have the very soft velvet like skin that bruises easily but for the most part mine isn't that stretchy. I also have a lot of bone and joint deformities that are not just in my feet. Along with bone, soft tissue and wide spread joint degeneration. It may be because it's so rare and not much is known about how it effects people differently at the moment. I don't honestly know, just feel like a bit of an odd ball at the moment. 😅😅
@ehlersdanlosandi 14 күн бұрын
@urbanhawk2886 That's really interesting, thanks for sharing your story!
@Karenhughessmith71 16 күн бұрын
I just got a dna result!
@RebeccaBarrett-f2s 17 күн бұрын
I can do that as well 😁
@Oxllie-7 17 күн бұрын
Yay i can
@hoosier612 18 күн бұрын
I'm late to the video, but as someone with the last name Ehlers I thought i would weigh in. My immediate and extended family from the Indiana and Ohio area all pronounce our last name as Ay-lers, so closer to the Danish pronunciation you gave. In my opinion, either way is valid. just that one way retained a bit more of the root name when it was anglicized.
@ehlersdanlosandi 18 күн бұрын
@@hoosier612 That's so cool!
@terribelle3 19 күн бұрын
After years and years of no dr listening (well, I ONLY get the nurse practitioner or PA) I STILL am NOT getting listened to!!!! 😢 I also think I have sjogresns. There's no help!!!!
@wangyaltsering7813 19 күн бұрын
Easy
@deepthireddy1789 19 күн бұрын
yeah i do
@Anonymous_V234 20 күн бұрын
I don't have Ehlers danlos syndrome But thanks beacause my knuckle in my hands are cracked😊😊
@ehlersdanlosandi 20 күн бұрын
@@Anonymous_V234 LOL, glad I could help! 😂
@annamurphy2277 23 күн бұрын
I highly suspect keds, i have congenital scoliosis and kyphosis, hypermobility, joint subluxation, joint pain, easy bruising, astigmatism, chronic migraine, subcutaneous nodules, with connective tissue thickening superficial to the fascia, food sensitivities that come and go, inflammation that comes and goes, potentially some pelvic floor issues (appointment in two weeks) and im sure the list will go on the more i seek out the cause of my issues, i also have a preauricular pit which just points to more congenital issues 😅 How do i ask my doctor to go down the path of keds??!
@ldudley501 22 күн бұрын
@annamurphy2277 Hi wow thank you for sharing your story sounds quite similar to me. I do have KEDS it took me 20 years to find out what kind of EDS as I was diagnosed as a 9 year old in 1994 I am now 39. My suggestion for you how to find out if you do have EDS or KEDS is to get a referral from your doctor to see a genetics specialist and ask to be tested for EDS /KEDS. I found out in 2014 through a urine sample it was positive because I was missing the enzymes that proved my plod1 genes are affected aka KEDS.. I truly wish the best for you and your search for answers.. EDS is more common than people do think in the common subtypes, however, KEDS it extremely rare I am glad to be a part of this community because I do not feel alone. And I really hope that if you can have by the means a genetics consultation bring up the issue of Ehlers Danlos syndrome. They can draw blood.They can do a skin biopsy and do a urine sample to see if enzymes are missing and point to the gene that is causing the mutation of the E.D.S that is manifested in you. Do not give up hope.There are many ways to find out.I wish the best for you. Thank you once again for sharing.Your story is remarkably similar to mine.
@ehlersdanlosandi 22 күн бұрын
@annamurphy2277 If you have a good doctor, you can say what you just said and ask for a referral to a geneticist. If they don't want to refer you, you can either try to find someone who will, or look into online options. I've heard good things about a Dr. Atwal that does online evaluations and will order genetic testing. You can also look at the Invitae website and get set up to do an online appointment with one of their genetic counselors.
@ldudley501 22 күн бұрын
@@ehlersdanlosandi Sorry, you deleted my comments.I was just trying to help.I spent 45 minutes writing that Reply
@ehlersdanlosandi 22 күн бұрын
@ldudley501 I haven't deleted anyone's comments on my channel, please try reposting it! It's possible KZbin took it down, but I think they send you a notification when they do that explaining why. It might have just been a glitch, too.
@EcstaticPeacocck 13 күн бұрын
Positing this publicly but I'll message you privately the second I'm finished. Your symptoms are almost the EXACT same list as mine! While I'm waiting on test results for confirmation, I am 100% certain that everything I experience is resultant from FKBP14 Related kEDS. When I receive my diagnosis (which should be in the next 8 weeks, IF I am confirmed, I believe I will be only the 24th person to be diagnosed with the FKBP14 version. If anyone else out there suspects they may have this condition please please PLEASE message me, I can provide you with links to studies detailing most known sufferers symptoms as well as information. As of the moment writing this I am 99% certain that I will be the only confirmed case of FKBP14 kEDS in my entire country...
@BeatheGoth-uk5tj 24 күн бұрын
I was diagnosed with vEDS in march 2004. I didn’t test positive for vEDS, but I’ve got all the clinical symptoms, and I’ve had one spontaneous arterial ( without any warning signs) bleeding that almost killed me. I’ve also had several spontaneous bleedings from smaller veins (without any outward trauma) to cause the bleedings. The Geneticists are 90% sure that vEDS is the correct subtype, as there are some vEDS patients who don’t test positive for the mutation. I’m Norwegian and I ‘ll try to explain how I pronounce Ehlers Danlos -« eh-leh-rs - dahn lohs». However, my psychiatrist, who’s a norwegian man , is married to a french woman, and he pronounces it: «eh-lehr- dahn-loh’» - without the s at the end of both Ehlers and Danlos, as he thinks that the s is muted. But when I googled the pronunciation in french, they didn’t pronounce it the way my shrink does, they include the s in both Ehlers and Danlos. Like « Syndrome des Ehlers Danlos». And many norwegian doctors I’ve been to up throughout the years, have pronounced it like» Ellers Dallas», Eners Dollos, Evers Davids, and in every other impossible way. Some docs have never even heard about EDS before and they ‘ve never ever met a patient who has the diagnosis .😅😅❤
@ehlersdanlosandi 24 күн бұрын
@BeatheGoth-uk5tj I've heard it pronounced so many different ways, too!
@michaelaalonzo5546 24 күн бұрын
I am 27 and was diagnosed about a year after I started looking into hEDS. The range of symptoms is wild between people. I don’t have many symptoms but I have had to adjust my life around my illness
@ehlersdanlosandi 24 күн бұрын
@michaelaalonzo5546 You're absolutely right, the range is so wild!
@shannongreenwell1278 26 күн бұрын
I don’t know anyone who has mEDS. However I am still here for all of my fellow zebras!
@ehlersdanlosandi 26 күн бұрын
Do you, or anyone you know, have Myopathic EDS?
@mymedsjourney 16 күн бұрын
Hi Laura, I have mEDS, formally dx in 2021 via history, beighton score, and genetic testing. In my personal experience, my COL12A1 gene is impacted. I had many health issues since infancy, although there was some muscle improvement in my teens through my 30's. Since my 40's (it is known that around the fourth decade of life issues can progress), health issues have worsened. It impacts my skeletal muscle, so not just at the joints but also where skeletal muscle attaches to the bone and basically everywhere skeletal muscle is. As this has progressed, it is like my muscle is thick silly putty. If I raise my hands up over my head and press into my back for example, it's like the muscle 'ripples' and pops or shifts. Sternoclavicle subluxations, neck instability, etc. Unfortunately, I also had severe mold exposure and my body's ability to detox is compromised. That made my symptoms much worse. Add on Lyme and Anaplasmosis which also weaken collagen - it's been a very challenging (albeit informative) time. I run daily fevers between 99.5 - 101.5. POTs/Dysautonomia, MCAS, etc. Despite all of this, and yes I do have some very down days, I am also grateful to finally have answers and that I'm able to share what I'm learning. Thank you for bringing awareness to it.
@ehlersdanlosandi 16 күн бұрын
@angelanickel6755 How interesting! Thank you so much for sharing your story! It's amazing how different and yet similar the subtypes of EDS are.
@nikiedgett8105 7 күн бұрын
@@mymedsjourneyI was told today I have a VUS of the COL12A1 please message me
@julietbihary9811 Ай бұрын
You have to pull yours? Mine do that anyway
@ehlersdanlosandi Ай бұрын
@julietbihary9811 to reach it's full range of motion, yes!
@Theartkidinthecorner Ай бұрын
Oh my god this explains so much. (Do you happen to know if this specific type of eds can cause jaw locking?)
@ehlersdanlosandi Ай бұрын
@Theartkidinthecorner I don't know for sure, but jaw locking is common with hEDS.
@Leo_Starshine Ай бұрын
Yes i can do it, lol
@SausageSideways Ай бұрын
This doesn't suggest EDS at all, just hypermobility. EDS is becoming overdiagnosed my geneticist told me. Also lots self diagnosing off social media videos. EDS affects the whole body and every system in it.
@ehlersdanlosandi Ай бұрын
@CannabrannaLammer I agree! That's why I included a direct link to a long form video explaining exactly what hEDS is. Hopefully people won't self diagnose based on my 5 second video and will instead click on the video link - or at the very least Google it! I was envisioning lots of people who can do this seeing this video, clicking on the link to find out more, then realizing they don't fit at all into the big EDS box, and being mildly annoyed at the click bait- but maybe one or two people who realize they might actually have EDS and go on to look further into it. Either way, awareness is spread, mission accomplished!
@Jelly_Bug Ай бұрын
I thought everyone could do this 😭
@patriciafoster5001 Ай бұрын
I’ve been diagnosed with Ehlers-Danlos, very late in life. My younger brother was disabled from birth. He was born in 1963, and at that time the closest thing that they could relate his illness to was muscular dystrophy, however, I believe it was most likely muscular, contractural, Ehlers-Danlos, with the more that I learn. He only lived for 21 years. How can I get genetic testing to see if my type of Ehlers Danlos is that or something else?
@ehlersdanlosandi Ай бұрын
@patriciafoster5001 I saw a geneticist to get genetic testing done. Any doctor can order genetic tests, but a geneticist would know more about what to order specifically, as well as how to interpret the results. You could try going through the online testing company Invitae to do the testing, the can set you up with a genetic counselor and send you a testing kit to your home - just stay clear of the ancestry type genetic tests (23 and Me, etc.) because they are not diagnostic medical tests.
@patriciafoster5001 25 күн бұрын
@@ehlersdanlosandi thank you, I’m sorry that I’m just now seeing your reply. I just got the notification for it. I’ll check into Invitae.
@HS-1828 Ай бұрын
Death sentence. How to take away hope.
@ldudley501 Ай бұрын
Yes I do have KEDS I was diagnosed at 9 years old with EDS then have had so many spinal fusions my whole spine has been fused from t4 to s1 then both my hips have also now are stainless steel. It took 20 additional years (2014) to get genetic testing with blood & and urine. PLOD1 genes are affected. My KEDS has made me a stronger character building and brave woman. Thank you so much for this video. ❤
@ehlersdanlosandi Ай бұрын
@ldudley501 You are so welcome, thanks for sharing your story!
@ldudley501 22 күн бұрын
Yes, thank you.Are welcome.I just don't like my replies to trying to help people seek help for their EDS being deleted. I. Spent 45 minutes on a Reply and you deleted it that shows the integrity that shows show towards the community.I am unsubscribing to your channel and will start my own happy wonderful day
@ehlersdanlosandi 22 күн бұрын
@ldudley501 I'm confused, I haven't deleted any replies/comments. I can still see your comment "yes I do have keds I was diagnosed at 9 years old..." Is that the one? It's still up and visible. If there was a second comment after my reply of thanks for sharing your story, it was not me who deleted it. It's possible KZbin did, though I would assume you would get some sort of notification that you broke their rules. I haven't had to delete any comments yet, since no one has been wildly inappropriate yet. To my knowledge, I've only had one viewer be rude, and I've left her comments up (they were only rude, not inappropriate or super hurtful or anything). You can check them out on the "is hEDS progessive?" video comments section. I'm sorry your comment got deleted, but I can assure you, it was not me who deleted it. Please repost it, I want everyone access to all the help they can get!
@YummyTakis1 Ай бұрын
I can only do this in my left hand 😅
@Jurrasic4544 Ай бұрын
I have it to
@LouisAndylau Ай бұрын
I have hitchhiker thumb
@sahilbansal396 Ай бұрын
Benign hypermobility develop scolioiss in future
@sahilbansal396 Ай бұрын
Benign joint hypermobility syndrome develop heart problem yes or no my doctor can say benign hypermobility is severe
@shannongreenwell1278 Ай бұрын
I have read about it and I can say that I feel bad for my fellow EDS zebras who have this subtype. Ouch!!!
@ehlersdanlosandi Ай бұрын
Do you or anyone you know have mcEDS? I want to hear your story!
@sahilbansal396 Ай бұрын
Benign joint hypermobility syndrome develop MCAS yes or no
@ehlersdanlosandi Ай бұрын
@sahilbansal396 Maybe :) As I've told you many times before, there are few issues with hEDS or HSD that are 100% all or nothing, black or white, yes or no answer situations. Some people may develop mcas, and some people might not.
@glucoseexplorer 2 ай бұрын
Yes, I believe I have this. I was diagnosed with osteogenesis imperfecta at birth, without going into my entire life story; I think it's actually this or some overlap syndrome. I have indeed been treated like a hypochondriac for most of my life, even after I just had a geneticist spell this out for me (she indicates I have a COL1A1 deletion, but mine has never been seen before); I am having a lot of trouble finding help. Any suggestions?
@ehlersdanlosandi 2 ай бұрын
@glucoseexplorer Are you looking for getting help with your symptoms or getting help finding a diagnosis?
@glucoseexplorer 2 ай бұрын
@ Both. I’m in NYC.
@ehlersdanlosandi 2 ай бұрын
@glucoseexplorer as far as getting an official diagnosis, I would recommend starting with checking your prior genetic testing- did they rule out all of the EDS subtypes with the test? If that's hard to tell, you can call or email your geneticist's office and ask. It's also important to know that most connective tissue disorders have a lot of overlapping symptoms- and osteogenesis imperfecta is a connective tissue disorder, so it makes sense that you are experiencing symptoms that are more than just brittle bones. As far as getting help for your symptoms, I would search on NYC support groups for OI or connective tissue disorders for recommendations of knowledgable primary care providers. For me personally, the biggest help has been getting more active, specifically weight/resistance training, and going low carb.
@Sorrely1 2 ай бұрын
I was diagnosed at 50. By that time most of my joints were arthritic and a lot of my extreme bendiness had morphed into stiffness and limited movement. I was only diagnosed when my daughter was. She was late 20s and had the max amount of points on the Beighton scale. I’d like to see an adustment for older people as well as the very young.
@ehlersdanlosandi 2 ай бұрын
@Sorrely1 I agree! They have recently made a separate set of diagnostic criteria for children, but I do think for people past around 40 or 50, nixing the beighton score and simply replacing it with reported past hypermobility would be a good idea.
@Sorrely1 2 ай бұрын
The problem is the main criteria can all be part of hEDS (which I was diagnosed with). My brother has bradydactyli in one thumb, my daughter broad upper feet and I have mallet toes. I have thin, old looking, bony hands and fingers and velvety, doughy skin. I have piezogenic nodules in both feet and subcutaneous spheroids in my elbows. Also congenital adrenal hyperplasia. We all navel swallowing issues and choke easily. I’m wondering if we all might nave clEDS rather than the hEDS we are all diagnosed with. Not sure the UK health system would be bothered with genetic testing as it’s expensive.
@ehlersdanlosandi 2 ай бұрын
@@Sorrely1 If I remember correctly, testing for cl-EDS is usually done separately from the other subtypes and is a very expensive test.
@Mekanic8384 2 ай бұрын
I cant do any of that no hitchhiker 😢
@vickycooper6638 2 ай бұрын
Why did you have trouble raising your arm? I feel weak and faint if I raise both of mine to say....hang washing. Trying to find out how many of my recent symptoms are linked to my old diagnosis of JHS...which I guess would be hEDS now. Thanks
@ehlersdanlosandi 2 ай бұрын
@vickycooper6638 It made my shoulder hurt if I held it for more than a few seconds. It felt fatigued too (just my shoulder, not my whole body), but it never made me feel faint.
@doublepinger 2 ай бұрын
In my experience doctors avoid treating pain, and just flat out refuse that men can be disabled as a concept. I've lost more than half my life trying to get treatment, with doctors doing everything left and right to tell me I'm just depressed after rows of medications, or need to get more sun and walks when they're the ones who took the MRI with visible spine degeneration.
@ehlersdanlosandi 2 ай бұрын
@@doublepinger I'm so sorry you've had such a rotten experience with doctors so far. I promise there's some amazing ones out there!
@mariado3690 2 ай бұрын
most of people are rather stiff, normal joint. Stiff is normal! everyone is stiff. flexible is not normal as only gymnasts alike are so sure it is same thing as hypermobile as muscle is your lax connective tissue too, softer than your lax joint? surely it is same thing flaxible and hypermobile joint as both are rare! ok you are saying you are stiff because need to stabelise joint..ok..but if you take medication to relax your muscle then you become instantly flexible too not stiff? so you are flexible and hypermobile - is same thing! if normal stiff person takes medication to relax muscle - he remains stiff not flexible! if flexible person takes medication to relax , then she will dislocate her joint at all perhaps as it is same thing as hypermobile - proof is that normal person who take medication to relax can not become flexible hypermobile. normal is to be stiff and not flexible. also may be you are stiff due to anxiety and stress, you don't know. it is from brain signal to stiffen up due to worry. so medication to relax takes all stress away and your muscle relax beyong normal so you are flexible then because of hypermobility.
@tudormiller887 2 ай бұрын
That's not a yoga move ? 🤔
@ehlersdanlosandi 2 ай бұрын
@@tudormiller887 Maybe! I don't do yoga, so I wouldn't know.
@gppoem3344 2 ай бұрын
Thank you for posting your video. I’ve been diagnosed with hEDS until my blood work comes back. This wait is not fun.
@ehlersdanlosandi 2 ай бұрын
@@gppoem3344 You're welcome! The wait is worth it!
@HiThere-ig5iz 2 ай бұрын
What's funny is I didn't know I could do this until the rheumatologist asked me to. I went to get checked for EDS because of my super stretchy skin. I also suffer from something called Neck-tongue syndrome, I experience TMJ, poor wound healing/easy bruising/scarring, dysautonomia and pretty much just always have some acute pains that come and go constantly. I just finished an echo to see if I have any heart abnormalities such as mitral valve prolapse. I also deal with POTS, PNES, anxiety, insomnia, LPR.. All the doctors essentially just scratch their heads and shrug at me 🙃 all this to say if any of this sounds like you, it never hurts to look into!
@keirapendragon5486 2 ай бұрын
👏Suffering Is Not A Competition! 👏 😅
@keirapendragon5486 2 ай бұрын
(which is VERY important to know when you live in a household where multiple ppl have chronic illnesses 🤯)
@ehlersdanlosandi 2 ай бұрын
@@keirapendragon5486 In the pain Olympics, nobody wins!
@keirapendragon5486 2 ай бұрын
@@ehlersdanlosandi Exactly! I felt a little silly when you said that in the video right after I posted that - Imma blame my impulsive ADHD trigger finger xD
@keirapendragon5486 2 ай бұрын
@@ehlersdanlosandi Also thank you so much for your videos!
@ehlersdanlosandi 2 ай бұрын
@@keirapendragon5486 You're so welcome! Thanks for watching and commenting!
@keirapendragon5486 2 ай бұрын
I did not know that nearsightedness was a common EDS thing. Been extremely nearsighted since I was 12 or younger (didn't get caught sooner by pure chance). Another checkmark on the list o.o
@Zac-m8j 2 ай бұрын
Hello, thank you for the awesome and informative video. At a recent visit to my doctor, she suggested that I might possibly live with EDS. I have been researching and have discovered quite a lot. I have skin hyperextensibility with a velvety texture, as well as the absence of atrophic scarring. I also have generalised joint hypermobility without any dislocations or subluxations, but it is milder than that seen in HEDS. However, I have noticed that I do not have easily bruised skin or spontaneous ecchymoses. My skin is quite sensitive and can be reddened very easily, but bruising has never been much of a problem for me. I do, however, have piezogenic papules on both feet. I know all three criteria must be met for a diagnosis, but I have been wondering whether my presentation would be taken into consideration. Much appreciation for the content 😊✨️
@ehlersdanlosandi 2 ай бұрын
@@Zac-m8j It definitely sounds like you could have a connective tissue disorder going on! It's for sure worth pursuing. I've heard of people with suspected hEDS getting genetic testing and finding out they actually have Loeyz-Dietz syndrome or something. Getting an official diagnosis is absolutely worth it!
@Zac-m8j 2 ай бұрын
@ehlersdanlosandi thank you for the feedback, will definitely continue my journey 😊🫡
@ehlersdanlosandi 2 ай бұрын
@@Zac-m8j Good luck! I'll be rooting for you!
@catherinepeet4037 Ай бұрын
It's me again, from another account. I have not made much progress. I saw my general practitioner again and she said that I definitely have very stretchy skin and hypermobile small/large joints. I have also discovered that I have broad forefeet (my forefeet are twice the width of my heels). Genetic testing is not available in my area, and I also can't get in to see a specialist. I have recently gone through all of the types of Ehlers-Danlos Syndrome and discovered that I have features from multiple, but don't actually meet the criteria for any. This last month has had me puzzled. 😂
@ehlersdanlosandi Ай бұрын
@catherinepeet4037 It's really common for people with EDS, HSD, or any other connective tissue disorder, to find that they have many symptoms of different disorders. It makes sense when you stop and think about it because they are all related in that they are all connective tissue disorders, so they all share many symptoms. If it looks like it's going to be too hard or a long ways down the road to get an official diagnosis, I would focus on how you can improve your heath in the present - physical therapy or home exercises to build up muscle strength, figuring out what type of diet works best for your GI symptoms if any (low carb for me), staying hydrated, avoiding injuries, and seeking treatment for any major symptoms.
@thesuperduperjex5074 2 ай бұрын
I have elastic skin i did not new till now😮
@thenewme075 2 ай бұрын
I saw rheumatologist and diagnosed with HSD my knees dislocate, feeling tired, joint pains, migraines, constipation, diarrhoea and stomach pains I'm in pain everyday my husband is my carer too.
@ehlersdanlosandi 2 ай бұрын
@@thenewme075 It sounds like you're struggling, I'm sorry! I hope you can find something that helps you.