Thank you so much for this video. I’ve suffered for 31 years with no answers and today I finally met with a geneticist who felt comfortable diagnosing me with EDS. I’m getting tested next week to confirm what kind specifically but I’m thinking classical because I have ALL the things you do. It brought me to tears to see this because I’ve never met anyone that had the same struggles as me and I’ve never even had a name for it until today. Thank you so much for sharing
Hmm .. some of these things I would have gotten more points for in my younger days, but now the arthritis got in the way of some joint mobility. Which I think is my body's way of saying "Hey! Stop doing that stretchy thing!"
Oh my god thank you so so much! This was so informative and there really isn’t another video that goes this into detail about their personal experience! Thank you again!
This is a great informative video that calmed me. Just wanted to say thank you. I thought EDS'ers looked special but you look completely normal so just that alone educated me and all the signs too, extremely good video.
Nope, we EDSers look like everyone else in the world, because EDS is an invisible illness. You can’t see it from the naked eye, however we can definitely feel it on our daily basis.
Thank you so much for this video. It’s extremely helpful. I’ve had severe health issues since I was a child and in my early 20s spent years seeing doctors trying to figure out what was wrong. No consensus was ever reached, but I don’t remember EDS ever being discussed. Now, at 35, I have just learned about this condition and almost every single health issue I have ever had seems to fall into CEDS or HEDS. My mother and grandmother also have/had many of the same issues I do. Thank you for taking the time to share your experience and educate others. I will be speaking to my GP tomorrow and hopefully I will be able to see a specialist soon
I have all the same things. And got tested. Nothiing turned up on DNA. So I got the hypermobility EDS diagnose four years ago. I am now worse then four years back. So It is very serious. Stay strong :)
You can do it, Julie! These illnesess give us immense strength and appreciation for life. I know many days that's hard to believe, it's a warriors journey! Believe in yourself, everyday. Much love to you and all the best your way.
I was dismissed by my rheumatologist saying it’s super rare, no treatment anyhow and if it was vascular I would be dead by now. My sister has cEDS and her daughter is hEDS. I think I am hEDS. One of my daughters tested genetically negative for cEDS. I feel certain there or more types than we know. I have a ton of the signs. Papuales, velvet skin, hyper mobility in the 90’s my pediatrician called me double jointed, tongue, subluxations, red cheeks, easy bruising, weird scarring, bumps on arm and leg bones.
Wow, this was amazing. I have all of these traits you demonstated you have in this video with the exeption of like 4. My great-great-grandfather was also named Stewart and I also got blue eyes. A lot of My joints hurt all the time So I am going to see a doctor soon
Thanks for sharing! I got diagnosed with hEDS the only difference from our symptons are the scars, I have atrophic scars, but our skin streches the same, I didn't get a genetic test yet, hope u shared about ur testing =)
I am getting genetic testing for EDS. I think I have classic type because of my scarring. And my joints have never dislocated. Thanks for your video. I didn't think my skin was stretchy but after seeing you I think it is.
@@Catlily5 it’s hard to explain, but you can just feel that they’re “wrong” or out of place. Sometimes it hurts, sometimes it doesn’t, and other times it’s excruciating.
Wait....shinbones aren't supposed to be bumpy? I'm watching everything I can because doctors where I am apparently aren't very familiar with it my doctor says she's sure I have but there's no testing for it.
I'm not hypermobile, but I have a lot of this. My skin is very stretchy, and I also have Raynaud's and dermatographism. Needless to say, my skin always shocks others. I discovered I also have a scar that is partially atrophic. I probably need to see a geneticist, but since I don't have serious symptoms, I don't want to be overdramatic.
Hah, I’ve been chasing a hEDS diagnosis for a year now. I can do all that bendy stuff and more. My friends and I used to play tic-tac-toe by writing on my skin with fingernails when I was in grade school.
I’ve just recently gotten my diagnosis of HEDS and waiting on my DNA swab to test for several things that go along with Eds. I’m concerned about the problems I’m experiencing with my veins. My geneticist said I was the first in her experience with longer arm and hand length versus height. I didn’t see you mention that. I don’t believe I have as stretchy skin as you but a little stretchy and loose jointed everywhere in my body.
@@shelbystewart5495 every family member I’ve shared this with keeps saying there’s nothing that can be done about it so they are not even interested in talking to their Drs about it.
I'm really starting to think this is my issue. I have every hypermobile thing except my right pinky.. which may have broken/dislocated in childhood and not cared for. I have often said i get 'corpse fingers' when i get too cold. Like all the blood drains out and my fingers are pale and skeletal. What sort of doctor do I need to see? I dont even have a PCP right now...
I realize this was 4 years ago, but it is worth a try. You mentioned the red dot that appeared. Curious to know the explanation. Similar symptoms that I noticed, and didn’t know the reason.
My sister has cEDS & dr were stumped by petechiae on her lower legs. She had to research for yrs and self diagnose not only herself but her daughter and then figure out which specialist to see bc GP was at loss as were other specialists over the yrs for various symptoms. Was the same when her estrogen dropped. Cardiologist couldn’t figure out her stuff. GI couldn’t figure out gut stuff. Neurologist couldn’t figure out headaches. Allergist couldn’t figure out food sensitivity. On & on. She figured it out finally. Went to a gynecologist that supports estrogen replacement. By then she suffered 10 yrs with issues! Luckily she taught me & I was able to begin birth control as I still have regular periods but had tons of symptoms of low estrogen. Be strong! Be your own advocate! She also figured out I had SLE when GP sd it was all separate issues.
Tongue backward is really hypermobile? I thought touching the tip of the nose with the tongue was... did not know the other things with the tongue were.
Hi Shelby, I have a lot of the same hypermobility that you do and I’ve been trying to get genetic EDS testing but my insurance refuses to order the genetic tests because I don’t have a family history of EDS. Do you mind if I ask what type of Doctor diagnosed you? And do you have to pay for the genetic tests out of pocket?
I also forgot to mention that I mostly have POTS symptoms and am waiting to get tested for it by a neurologist, which is why I want to get tested for EDS as well.
Hi Alery (Love your name)! I was diagnosed by a doctor in Minnesota, USA that has cEDS. However, I think I may have hEDS possibly instead of cEDS. I haven’t been diagnosed by a geneticist yet because the geneticist I saw was also not convinced I have EDS because I don’t have a family history. However, I’m looking into genetic testing through Invitae because they have an EDS panel. My insurance might cover it, but more than likely I’ll pay out of pocket. Hope that helps!
I’m in the same boat. My PCP was certain I have POTS. Soon as my state insurance denied any & all tests. My PCP told me there’s nothing wrong with me & I need to see a psychiatrist. I’m pretty sure I have some form of EDS but I know I’m not profitable enough for any dr to care. 🤷🏼♀️🙄🤦🏼♀️
I had all of the joints and half the tongue 👅 but my skin isn’t stretchy, but what the heck I have the foot bumps and red skin and raynauds BUT what is the disease?
You don’t have to have super stretchy skin to have EDS. You could have Hypermobile Ehlers Danlos Syndrome which doesn’t have as many of the skin issues. Here’s the most up to date criteria for hEDS diagnosis: www.ehlers-danlos.com/wp-content/uploads/2017/05/hEDS-Dx-Criteria-checklist-1.pdf
You only have to score 5 on the beighton score to be diagnosed and the degrees on the arms and knee has only got to be 10 degrees. There’s plenty other issues that can come along with this. Gastro issues, heart and kidney problems. It affects everything because of the tissues in our body.
My Neurologist was the one who diagnosed me with EDS. And I, too have Classical EDS, mine is type two. I have skin hypersensitivity and I also have widen scars, those “ bumps” that are on your arm are on my scalp and my wrist. That happens to me when I scratch my skin, too. Ugh, Brittle nails and hair, 👿! I have redness on my cheeks, likely due to our cEDS. Are you lactose intolerant or gluten intolerant? I am and I was lactose intolerant as a baby.
I just started watching this but can you explain what the red dot is and how it pertains to EDS? My daughter and I are both diagnosed and have weird red dots on one or a few places on our bodies. We have no clue what they are. Also, sorry if you explain in the video and this question is asked impulsively. Gotta love my ADHD that tells me I must ask now!! 😂
I have all the same symptoms as you minus Raynaud's plus some more things. And im sure there is a lot you didn't mention 😪 did you get the genetic results back?
When you get a eds diagnosis You need genetic testing These types of EDS has known genetic mutations: • ARTHROCHALASIA EDS (aEDS) •BRITTLE CORNEA SYNDROME (BCS) • CARDIAC-VALVULAR EDS (cvEDS) • CLASSICAL EDS (cEDS) •CLASSICAL-LIKE EDS (clEDS) •DERMATOSPARAXIS EDS (dEDS) •MUSCULOCONTRACTURAL EDS (mcEDS) •MYOPATHIC EDS (mEDS) •PERIODONTAL EDS (pEDS) •SPONDYLODYSPLASTIC EDS (spEDS) •VASCULAR EDS (vEDS) The only type of ESS that has no known genetic type: is HYPERMOBLIE EDS (hEDS) She would of had a positive test that showed up CEDS and passed for it instead of HEDS
I am running from doctor to doctor and i have all the symptoms except 2. I am way above the cut off for a referal for gebetic testing. Yet i have blue hair and therefore my pain must be psychosomatic 🙄
@@shelbystewart5495 i had a screening now (called and they had a cancellation i could attent) and the doctor couldn't genetically test me bc i am not hypermobile (very tight muscles due to percieved instability) and the health insurance only pays when there's hypermobility. So yeah, aren't hypermobile, don't habe 3500 bucks? No test for you. Let's see how this ends
Says the lady with probably no science or medical degree 🙄 this is an actual disease and is hard to diagnose but it has many implications on the body and cause many problems.
Your comment shows that you’re ignorant as well as rude. There are medical conditions that are invisible to a RU-vid audience. I have hypermobile EDS which wasn’t diagnosed until I was 69, mainly because doctors aren’t getting enough education about it when they’re medical students. My joints don’t dislocate, they sublux but this version isn’t as well-known. Until I met a particular gentle chiropractor who stabilised my joints, I’d be in bed for one week every two months. I had endometriosis, adenomyosis, chronic fatigue and interstitial cystitis for over 30 years, heavy menstrual bleeding for 10 days, frequent sprains, tendon and ligament tears, labral tears in both hips, DISH Syndrome (skeletal hyperostosis) from neck to coccyx, early osteoarthritis in every joint that was visible on x-rays from my early 40s. All of the above are known comorbidities of hypermobile EDS. I’ve also survived Grade 3 infiltrating carcinoma (breast cancer) which is now being suspected as another comorbidity of hEDS. I had a less than 40% chance to survive 15 years because of the size and grade of my tumour and I had a negative estrogen receptor status so drugs like Tamoxifen would have no effect. Also, progesterone doesn’t work the same for those with EDS. I learnt this from Dr Sharon Meglathery, a medical doctor who has hEDS. Her website is www.rccxandillness.com. She has an excellent Facebook group for anyone who'd like further education on EDS. Most of the comorbidities require more pain medication than usual. None of them would be visible to anyone watching a video. Those of us who’ve already been diagnosed or made aware of the different types of EDS are trying to enlighten and share our education with those who who are still struggling with a set of symptoms and signs that they can’t get answers for.
Omg 🤯I thought everyone was able to do all of those things! Until now 🥲 The only thing I’m not able to do is touching the floor without bending my knees… but I do have back issues
