Відео

I feel like I am constantly having to prove myself to people, even other people who are a zebra 🦓! I have it on paperwork from my Neurologist. I have the Classic EDS. It really sucks that we have to feel like that! I am not as flexible as I was when I was younger, that’s because of Osteoarthritis.

Just to let everyone know she is still alive

Thanks for sharing. After my diagnosis I looked for a video like this to understand if it was accurate. All I read about was dislocations but that didn’t make sense to me. I can relate to many of your “tricks” thank you!

Your with w weirdo

You do not to prove your disability to anyone! People are haters and a hater is gonna hate so ignore them.

Not all people with hypermobility have visible hypermobile joints. Many people don't have a score on Beighton Score and still the problem is there usually the more hypermobile the less you will move your joints because muscles and tendons get hardened since your body is trying to compensate for the looseness on joints... General pain, being born with scoliosis, pops all over from joints getting out of place and going back. Jaw disalignment, pots and so many more other problems not every person with EDS is the same. EDS is not about flexibility and flexibility is not hypermobility. People tend to mix it and besides you don't need to proof anything to nobody if you have EDS then you have EDS. There is lack of information and many doctors are dismissing people with EDS because they didn't scored enough on B Score when there is a lot more to EDS than making few gymnastic tricks... Sadly many people don't get that and some doctors as well.

i just realised i can do all these, i used to be hypermobile when i was a kid my parents usually commented on how i can sign up to be a gymnast or a ballerina. now i can barely stretch or do splits without all my bones cracking, my knees used to be mobile but now my knee caps dislocated and crack a lot. my biggest issue recently is bone pain and a lot of joints cracks. is what i have eds? or something else?

I know this video is super, super old but I recently got diagnosed with Ehlers Danlos Syndrome Hypermobile type myself. My physical presentation is a lot like you - my elbows are a little more hypermonbile I think, but other than that we are very similar. I had such a hard time getting people to understand that all of these small abnormalities actually DO point to something much bigger. Anyway this was very validating to watch thank you!!!!

I always hated it when people would question my medical issues. I don't get that as much since my brain surgery(for Chiari) but I still seem to find that one ignorant person who thinks everything can be cured with herbs. I also had my ortho confirm I have EDS since my MRIs show damage to multiple joints. My shoulders and right elbow are the worst. I have a lesions on my humerus on both ends of the bone which caused a fracture on both ends. My labrum is also torn in multiple places. I was actually starting to second guess myself and the geneticists that diagnosed me but it feels good to finally have proof even though I'm looking at multiple surgeries this year to fix the damage.

My nose has literally no bone.i can literally smush my nose

Fuck the people who dont believe u wow.these people are just trolls but genetic disorders are on a genetic level. If he wants proof he can pay for that.what an asshat.the proof is the fault in our genes.if he cant get it then screw that.u can be stiff and have eds hypermobile. I also have floppy joint

This is making wonder about myself because I can do almost everything she did. I have gastroparesis but that doesn't explain other unexplainable issues i have

The collar bone also shows because with eds our shoulders fall forward and we can't keep them held back. That also makes our collar bones stick out more.

Your unconventionaly beautiful. I noticed that like...right now

Staying physically fit has helped me a lot. I still have sooo much pain but I make myself push forward. I have what I call crash days. And I'll sleep for 12 hours straight. But I kill myself till I get a crash day. It's very hard. With my life so many people depend on me i have to just push forward. I have no choices.

OMG, hun! Thank you so much for this. It humanizes the condition and is so much more human versus reading peer review journals. I would like to know if you have had any neurological symptoms like epistalsis initiation difficulties, or sleep problems resulting in pseudo psychosis from sleep deprivation due to terrible pain. I understand that this could be really personal information about yourself and I don't want to post some of my other symptoms on public forum, too. But if you have time and think it's okay that I tell you about some other stuff in email or direct texting just to know from another person if it's happening too. I just found out things recently, because I was adopted as an infant.

I just learned about this syndrome tonight. I was reading online about fingers hyperextending, because mine do that. I can touch my right wrist without holding onto my fingers, and bend fingers of both hands backwards at more than a 90deg angle. My knees constantly pop out of joint, as do some of my toes. I can dislocate my thumbs. I was able to put my palms flat on the floor without bending my knees, til I tore a disk in my back. I've been told by a physical therapist (actually, 4 different ones) I have hyper mobility, but didn't think anything of it (except my husband says some of the things I can do creep him out). I'm 65, & was dxd with RA a few years ago, but I don't have the typical joint issues that go along with it. Now I'm wondering if I should be tested for EDS. BTW, do your joints make cracking & popping sounds all the time? Mine have all my life, and I've been in pain management for 15 years.

Yeah you definitely have eds cause I have eds and I have all of those symptoms who ever told you to show proof have no idea what they are talking about you don't need to show proof

omg.. sorry but f**k people and them wanting to make you prove it...sorry you suffer with this condition..wish you well,

I'm wandering if anyone can help me out. I did Taekwondo from 7-14yrs and some other stuff growing up. Even as a kid I complained about my knees and hips. As a kid I could sit and place both feet on both knees, get up and walk on both knees. I could put both legs behind my head, do front splits and very close to being able to do side splits. However, at 34 and not having tried in 20yrs I can't, not even close. I've always had digestive issues, malabsorbtion of micro-nutrients. Now I've had issues with every joint as well as having chronic pain in my back. I have arthritis in at least my left knee but thats the only place the doctors have X-rayed. I was in my 20s when a doctor finally noticed I have 'Osgood - Schlatters disease', which I've had since a a kid. I get heart palpitations with the occasional tearing sensation in my chest that I also get in my intestinal region. I have bad gums despite having better oral hygiene than most people I know... Teeth are perfectly healthy. I have excessively strechy skin on my hands, eblows, belly, neck and face. I'm constantly losing work due to unreliability, mostly back injuries, sometimes my knees or hip siezing up. But according to the gastrologist and cardiologist who picked up symptoms, there are no reason for me having them. When I stumbled across EDS when looking up Osgood-Schlatter, I thought I might have a way of explaining all my issues and had an appoitment with an Orthopaedic doctor coming up. Well, I've had that appointment and she seems to agree with the gastrologist and cardiologist that not a single region of my body works correctly but there's absolutely no reason why.

I'm trying to figure out Iif I have this... And there just seems to be more and more that I find that I relate to. Some of which i just thought were normal?? But. O.o

ummm....i can do everything u do...like legit everything...

Not all disabilities are VISIBLE!

thanks for the info :-)

I'm going to the hospital on Thursday because I might have eds I'm so worried can someone tell me what to expect?

If you have normal IQ or above average IQ it's Aspergers. If your IQ is slightly lower then average its NVLD. I was told as a kid I had ADHD and LD. I have always been organized and very focused, but very hyper. I never though I was ADHD. Maybe 10 years ago I heard about Aspergers and doctors swore I had it and other doctors said no way because I'm to social,but never been tested. A few years ago I discovered NVLD and I though it fit my life much better and my Social Works thinks I have it.

I have sensory Processing disorder, but NVLD fits me better then Aspergers. Sounds,lights and food do not bother me. It's mostly clothes and textures. I'm 32 now. Since I was a kid tucking in shirts always bothered me. The crunchiness of the sides make me feel so anxiety.The last month or two belts have started to bother me. It's like I feel the belt 10x more. Not as a kid, but as a adult for years shoes have never felt tight enough. They always feel like they are falling off. I did not learn to tie my shoes till almost 10. For years I have hated wearing jackets or sweat shirts with hoods because they get me so annoyed. For about 4 years I have not slept in my bed because it causes me pain so I sleep on the couch. When snuggling in bed with my wife I can never get comfortable. If I find hair in my food I vomit. Not very offen, but if I shake someones hand and it feels to soft or ruff I need to wash my hand as soon as possible. If someone adjusts the seat or mirrors in my car it causes high anxiety and It will take me between a few hours and a day or 2 to feel like it's in the right position. I have chewed on my to tongue and bit my nails since a kid. I bite my nails much less as an adult. I also had tantrums all the time as a kid and teenager and still as an adult.

You definitely look like an EDSer. Are you an aspie too?

when you say you have pain what kind of pain? I've recently been diagnosed with fibromyalgia but I believe I have a sensory processing disorder as most of my pain seems to be triggered by over stimulation...

WOWWWW! We're so similar! How are you doing now? You should make an update if you can and are interested in doing so!

like for me being 13 its feels better when i dislocate my joints

Yo puedo hacer todas esos movimientos menos los de los brazos,hasta me sobra piel de todos lados ¿soy hiperlaxa ?

I feel you girl. eds is a nuisance heritage syndrome! you not alone. from afo's, kafo's to neck, back, and wrist braces and silver ring splint. some days I wonder if people think I just got out of the hospital from a serious accident. when really it's just hypermobility, dislocations and connective tissues issues. and the scars ugh that doesn't help either. just sleeping can cause pain, am I right. I too, usauly have to rest all day for a event like you said a party just to act energetic. I do have good days, those even come with at least 4 dislocations, heck sleeping can do that! from one eds to the next~~ may the zebra ribbon bring awareness ~~ :)

fuck people who ask for proof... seriously? Ask them for proof they are a human being. I smell a troll, personally. But I am not sure why you are even responding to that sort of thing. You can spend your whole life doing that... or just talk to the people who have working hearts and brains. Don't fall for this nonsense... it can't hurt you unless you let it hurt you. Like martin LKJ said, it doesn't matter what they call us, it matters what we answer to... I get it though on one level.. bc we spend so much time truing to get someone to believe us and get help... but once you get that ticket, just walk right by those haters and don't look back!

Thank you so much for this video. I'm just starting my journey after being diagnosed only a few months ago and it feels so comforting hearing about someone having the same exact experiences I do.

2 years ago I went with a broken arm for 4 days and didn't know.

I have EDS and hipernobility I also need braces

i have everyone of those symptoms!

I just learned of this, it has explained a lot of my problems in life to this point. I am 27 and have never heard so many people share the same feelings....I don't know where to start to help myself..

You look like emma roberts. 👍👍

That was a beautiful story. I found you while looking for info on Sensory Processing Disorder. I hope you are well!

I dislocated my knee on the 11th of February and the doctors assessed my flexibility in my leg (the good one), arms, fingers etc. and they said that I had dislocated my knee because of EDS and hyper mobility in my kneecaps and the worse thing is that I can't pee and it's swollen like a balloon

I'm quite confused, so if you can do all those things you have EDS? I've had pain in my joints all my life, and I can do all those things and more, but it never hurt so much that I need to see a doctor for it to be diagnosed. I get my fingers, wrists, ankles, knees, shoulders and elbows dislocated often, but I don't find it so painful... I just pop it back in place. I just wrote it off as having small joints, cause you can tell how small they are compared to others. For example I can't wear bracelets, and my watch doesnt fit anyone that's not a child cause my wrists are so small. They pop while I'm walking, or picking something up, or just moving around, so is this something I should be worried about..?

I'm 9 I was born with a hole in my heart and eds it's very hard to live with this i wish there was a cure but it makes me and everyone with this unique and everyone with out this to

I have eds and there's 3 stages the 1st stage is the most serious because the reason for that is the tissue is not attached to any muscle and the 2nd stage is not as serious and I have the 2nd stage and you have to be careful because your heart is at risk for so much and the 3rd stage is not much but still be able to stretch your skin

You are such a wonderful, mature, young lady. It is nice to see people your age helping families and people newly diagnosed or perhaps have very little understanding og this genetic disease. I commend you for your unselfish acts of kindness and getting information out there to those who neen it! Kudos to you!

You have a valid genetic disease, why would anyone require "proof?" They are not Social Security Disability workers, nothing to do with your medical care costs, if they want to learn more about the disease, there's google. Which I can't believe they didn't go to first. There are many disabilities that are not seen by anyones eyes...there are psychological diseases, blood disease, and just so many others that are not readily seen by passing by someone. I've worked in the medical field my entire life and sorry but I still question why anyone would ask any disabled person to explain their disability or show proof of it. You seem to take it well, but how well if you are continually asked when out. Like someone disabled medically and use handicapped parking spots...I see people at stores ranting and even yelling at someone who can walk, but park in handicapped spots. Anyhow I commend you for taking the time to learn about your genetic disease and calmly can explain it to strangers. I wish you the best of luck!! Fo you have a link to your blog? I think it would be interesting for anyone who is newly diagnosed. Thank you!

Hi. Do you have issues with bowels?

Hi : ) I think we have a lot in common. I have fibromyalgia (have you been diagnosed?), PTSD, anxiety attacks, bipolar. I also experience "sensory overload" as you describe. My service dog is Cody, a lab. Please be warned the public can be nasty about service dogs. Patches stating "no petting" help. He will be a "working" dog and then a pet when you come home.