♡ What Is Ehlers Danlos Syndrome? (EDS) | Amy Lee Fisher ♡

[@motionless_horizon]

I can do everything in this video and have been sick for a long time (the past 7ish years) and doctors don’t know why, but I saw this and wow I feel like this may be it.... Edit: a year and a half later and I’m diagnosed with Hypermobile EDS because I'm a carrier for Dermatosparaxis EDS . Amy this video is what gave me some base info and made me want to research more about it. I brought it up with my doctors after some more research about it and they decided to do testing! So thank you Amy! I know you’ll probably never see this but if you do I want you to know you’re the one that led me to getting a diagnosis

[@nomeslife]

How are you going?

[@spideywidey100da]

Thats sad that your doctors couldnt figure it out on their own for that many years. hope all is well.

[@motionless_horizon]

Naomi Samantha I'm doing okay, definitely not as good as I wish I could be, I've gotten good at getting IVs and getting doctors to listen so that's good lol

[@wishyouthebest9222]

@@motionless_horizon Unexplainable sufferings we go through but it will all be good in the end. Only strong people endure strong pain. YOU are strong. I will pray your burden may be lightened. May Jesus bless you.

[@yumiwatanabe440]

i can do it too but never heard about such condition never diagnosed and didnt had any negative effects. weird

[@kaande6453]

Rest in paradise gorgeous 😭

[@janaeallen7618]

Who else started stretching their skin ?

[@rayanakesty]

lmao

[@imasimpforbandsmembers420]

Me😂

[@dawna4185]

so glad it wasn't only me....

[@allysonrankin8724]

Janae Allen hahahah I did

[@rubyrose3967]

Lol me 😂

[@Chartingthefall]

My boyfriend of 6 years has EDS type 3, and so does his mom, she has gastroparesis and he may develop it as well in the future so it's very refreshing to come across someone who is very similar in health to him, also helps me get educated about the illnesses and how I can help him in the future.

[@themushiest1550]

3:55 she just popped her arm back in place like it was nothing, respect!

[@jessica.santillo]

Captain Sardonyx I started screaming lol

[@KitsCreations1998]

Seriously something that happens on the daily for people like us. We're pretty bad ass

[@fiona1396]

i do that all the time, i can also pop my wrists out of place and a ton of other stuff. it just seems normal to us lol

[@saeran8079]

That part is funny to me because I can do that but all the way around my chin and touch my ear on the other side

[@mangoplays8775]

Ender Bro ii

[@becca7637]

You're such a brave girl. You can just make a video about such a bad illness and act like it's just a perfectly normal thing. You're so inspirational and you're such a big help to others who maybe don't know much about this disease. I hope that you do stay safe and healthy. ♡

[@dbeazrn3934]

You are an incredible & beautiful young lady. Sometimes I become melancholy living with Rheumatoid Disease (effecting my ligaments, tendons-micro-tears, stiffness, etc)/Arthritis, OA, DDD, Bulging disc (3) w. chronic sciatica, fibromyalgia, CLBP & of course, chronic pain syndrome. The fibromyalgia is a little easier for me to deal with than many others who suffer as mine responds well to swimming, relaxation & meditation so I’m blessed that meds aren’t needed for now. I was first diagnosed with RD/RA in Sept.,1990 so celebrating almost 29 years. I’ve also been a RN for 25 years and I continue to learn more about chronic diseases/conditions from patients than from cont education & medical colleagues. I am so proud of and touched by your willingness to support others, especially by teaching others with EDS or even old RNs like me, who until about a year ago knew absolutely nothing about EDS. May God bless you-Beautiful & Wonderful you as you continue to be a resource & blessing to others. 🥰🥰🙏🏼🙏🏼🙏🏼🥰🥰

[@kaitlynputter6092]

Hi amy, I miss you ❤️ Started watching your channel about 5 years ago, at the time I had never heard of eds, found you through your paralyzed stomach video. I was having a lot of issues with my digestion at the time, no one could find what was wrong so it was just 'probably ibs', not helpful and I was very uncomfortable most of the time. It brought me a bit of comfort to know I wasn't the only one struggling, and made me grateful for still being able to digest food at all. I never even had the idea in my mind that I may have the same illness, I've always been hypermobile but a lot of the ways I could move I just thought were normal. I've had chronic joint pain as long as I remember, going back so far I genuinely thought it was just normal for everyone loll! Recently got access to a doctor, and went in to talk mostly about my knees, and though all my joints are a little achy, my knees are byfar the worst and often when im walking they feel like they pop out for a second, not dislocating, but a sharp pain, feels like rolling an ankle but with my knee caps 💀 Was curious to see if there was anything I could do to help it! I explained my history, and what was going on, mentioned that I was double jointed in a lot of places and thought maybe over extending long term was what was causing it. Doctor then asked if my skin was also stretchy, it is very, he made me do some hypermobility tests, asked if anyone in my family has similar issues (my dad does), I starting to recognize some of these tests pfff! He proceeded to tell me that my joint pain is most likely caused by a connective tissue disorder/hypermobility disorder, and it was kinda a crazy moment, all the joint pain, fatigue, muscle pain, bruising, popping joints, GI Issues, weird allergies, sensitive skin, hell even my ADHD LOL it was like all of these unexplained issues and problems I've had all my life that had no explanations finally have an answer :'< All along as I was watching you share your life with us, wondering if I'd ever really know what was going on with my body, my answer was literally being explained to me right in front of my face 💀🙏 You were an absolute angel Amy, I'm so grateful for all the information you have shared with us, getting eds known about, letting me know what to watch out for, even some tips to make life a little bit easier! Love you forever, rest well ❤️

[@leahz539]

haha i loved the chewing gum-hair tie analogy

[@fairlyregretful]

I got diagnosed with EDS type 3 last summer, and my mum has type 7B... I've been struggling with it a lot lately. I haven't seen your channel before and this video is the first of yours I've ever watched but you seem like an amazing person and I hope I can handle my EDS as well as you one day!! God bless you girl 💖💖💖

[@ameewiltsey2181]

I love how open and willing you are to explain your condition and you don't dance around the subject and pretend its not apart of your life and who you are like some others might you have accepted it and arnt ashamed of it I'm super proud of you and how willing you are to answer all these extremely invasive questions thank you its been very interesting listening to you

[@Autumisprime]

I also have Ehlers Danlos Syndrome hyper mobile type, POTS and found out I also have mast cell activation syndrome! Glad I found your channel! It’s nice to know we aren’t alone!💚

[@Autumisprime]

And btw you’re gorgeous!!!

[@leah_lani_may]

Can you do a video about you and Tom? Like how he handles your illness and what it's like for him having a girlfriend with a chronic illness?

[@1jazzyphae]

leah that would be awesome!!!!

[@aussiepilot4701]

I stumbled across this video purely by accident, I hadn’t heard of this condition before, it’s interesting but I also feel a little sorry for you, what you have to go through with the tubes and dealing with dislocations and all the other problems you have. It makes me think what we take for granted everyday, take care and thanks for sharing.

[@emilymiller6097]

I watched one of your videos about a year ago and then got into your channel a couple weeks ago after getting into Fathering Autism and although chronic illness is difficult, I'm really respectful of your strength and positivity. Speaking out and educating people about your experiences is amazing! Channels like yours definitely change the way I see the world. Today I saw a lady with very obvious autistic stimming and instead of staring and avoiding her, I smiled and felt comfortable because I have a better understanding of what she might be going through. Lol, also it's currently just after midnight and my first decision for my birthday was to watch a couple of your videos before I finally sleep after my bf making me stay up just to be the first to say happy birthday XD

[@Smith.S.sStocHasticSs]

"Instead of staring and avoiding..." 🤯👏👏👏👏👏🤟💪incredible. I always thought I'm a bit of a psychopath bcuz I seem 2b the only one who will laugh at or make morbid jokes around ppl who like... their baby just died ten days old and she said I was the only freak who's fucked up enough to be willing to go to the cemetery with her every week and shop for solar powered mini xmas trees to stick on it or gourds and pumpkins. I was soo much more comfortable around a baby's grave than around living children. And something about seeing people's reactions walking thru when they stop and realize this tiny tombstone is a baby's and they take their hat off and take a moment. I love that shit. Seeing that people care. And validating that it is a big deal. It's comforting. But yeah what you said about knowing more about stimming understanding it makes u not weirded out. That's it! Thank u. I'm probably still mostly psychopathic but a benevolent one. It is part of the autism spectrum tho so I donno. They say we think in pictures rather than words. I don't get it. Do normal people see words on a page or on a chalkboard or... like I donno what think in words means. I'm always one foot in one foot out of reality and fantasy at the same time.

[@rhiannandonnell2634]

It’s always inspiring to see someone else with EDS and POTS and showing everyone how it affects us. I never meet anyone with it, especially not someone around my own age (17) Thank you for advocating for us! You’re an inspiration and I hope to meet you some day to tell you really how much this means to us!

[@cohrah462]

You kinda look like Noah Cyrus

[@KaneCiticani]

Coh Rah not even close bro, Noah is ugly as fuck

[@KaneCiticani]

Coh Rah please don’t put that image in my head

[@samanthakelley1299]

Okay, did she say "hair bubble" because that's cute af. 😂

[@kbear6863]

Samantha Kelley hair *bobble :) it's used in the Uk quite a lot if you didn't know 😁

[@samanthakelley1299]

K Bear awh, regardless it's cute. 😂

[@Emily-fl1bx]

Yeah I say “hair bubble” all the time❤️

[@amandayocham7076]

Hair bauble.

[@livyloolooloo6833]

It is cute. Hair bobble ❤☺. Bobbles are miscellaneous things that are usually pretty. Pretty accessories. Like hair things or earrings. Love it. ☺❤

[@cat-zf6ub]

She really just dislocated her shoulder like it was nothing 😧

[@maximoose1234]

Wow I love how positive you are even though you have multiple chronic illnesses. You really inspire me.

[@clookaclaaka8007]

i got diagnosed with hEDS and POTS a couple days ago, and will probably develop gastroparesis later in life. watching your videos has really helped me come to terms with this. thank you so much

[@Knighttus]

my problems look super small compared to what some people go through daily, may god help you recover and bless you forever.

[@hollow795]

Amy, I have dislocated my right hip twice in my life and it’s a pain that you don’t quickly forget. I also have other medical conditions that have caused distress in my life. However, I try to keep an optimistic attitude. But when I think of all you’re going through at your young age, I am very impressed with your positive outlook. You are to be commended; I’m not sure I would have such a sunny disposition if I had to manage the issues you have. God bless you for your good example.

[@minaolenpossu]

I have a joint hypermobility and a heart condition, among other things. I'm so happy that there are more chronic illness youtubers who are talking about these things.

[@1307lilis]

Hi from Puerto Rico my mom's has EDS too... She's now 52 with 13 operations including both knees and both shoulders and have a lot of nerves problems like fibromyalgia neuropathy and others but thank God no problem to the heart! Me and my brother didn't herited the syndrome at all but I do have a lot of nerves problems and my brother do have a lot of dislocations problems too! Both of us are getting worse with age. But we support each other a lot because each one of us kind to understand the other the best! The most difficult part it's getting other's to understand that this is real... I say to people that we are old people inside of a young body... Every day it's something new, another problem and never have a pain less day but we have to keep going. Blessings and prayers for you!!! Best wishes!

[@aurxrabtsvt126]

I know I’m a few months late. But thank you for making this video and educating so many people on EDS. My sister died almost 3 years ago due to EDS. The lack of knowledge in the medical field is frustrating. Just thank you, this video made me very happy. My family and I are continuously trying to raise awareness for EDS and recently I’ve seen much more on it such as on social media and tv. We’re heading in the right direction. I hope you are well and can live as normal a life as possible.

[@cosmiccow]

Thank you for sharing, I have EDS too and so many people even professionals have no idea what it is or how to help. I wake up in tears from pain. Big love and gentle hugs 🤗

[@maybe_brooke]

Omg I'm super late to the party but I just found this video while trying to find some actual people with EDS instead of just doctors!! I have hypermobile EDS too! My ankle has broken twice and my knees dislocate every couple days, but I just learn to live with it. This video is really inspiring to me, because I don't actually know anyone else with my (or our, I guess) disorder, so I'm really glad I found you and this video. You're an angel, thank you for spreading so much awareness and information about people like us xxx

[@kyleereed5730]

ugh she's so sweet! i'm watching this as i comment but oml my fingers do the same thing! my mom, sister, and myself all do it. you're so inspiring!

[@Bummer1980]

I have hEDS & so do my two teenage daughters. I went 36 years with out a proper diagnosis. It wasn’t until my younger daughter got hurt that we got diagnosed. She went to pick up a basketball at school and couldn’t stand back up. She had a second degree separation of the AC joint (in her shoulder) right wing scapula and pinched nerves in her neck. The urgent care Dr kind of questioned me and then called her school (it happened at school) and then asked her. Basically wanting to know if some one tried to rip her arm off. The Orthopedic Dr was the one that put it all together when asking about my health and then my other daughter. He told us I know you have a connective tissue disorder but sent her to the children’s hospital to figure it out. She was 13 at the time. She’s 15 now. Once I learned about EDS I was so angry that I hadn’t been diagnosed earlier, but thankful that we know for my daughters. My girls and I don’t have the stretchy skin. We are have different range of motion and my older daughter with a higher range of motion doesn’t have pain. I live in constant pain. My younger daughter was diagnosed with POTS at 8 years old. She’s had chronic constipation at birth. She has had a ton of gastric issues. My older daughter had kidney and bladder issues. I’ve had some VERY VERY serious health issues. I had massive bi-lateral pulmonary embolisms. 8 of them back to back! There is just so much that goes with EDS.

[@beccachambers4007]

Only Amy would use a chewed piece of chewing gum as an example 😂❤️

[@amyleefisher52]

Becca DoesMusic Ahaha I was pretty proud of myself, I thought it was a good example 😂

[@amyleefisher52]

alex living chronically really who? 😱

[@han5234]

My physiotherapist actually used the example of chewed gum to explain EDS to me!

[@verawaters8787]

I always explain to people who ask that my connective tissue is more like chewed up gum that keeps stretching and stretching and gets weaker, and that normal connective tissue is like bungy cords with a stopping point.

[@gorillaau]

I thought it was a clever example. Well done, Amy!

[@SamirCCat]

You seem so organized, still spontanous in your videos! So informative and well put together! Seems like you have a natural ability to focus and teach stuff, because I would happily listen to anything you say. Gonna check out your other videos!

[@monickalynn4365]

Amy Lee looks a lot like Amy Lee (Evanescence)

[@lunatictuna4599]

sick during the day but a professional singer during full moon

[@oliviakate8172]

monicka lynn she also looks like that Amy lee 33 girl everyone used to watch play minecraft.

[@MummaQuan]

Send this into Shane Dawson stat! We’ve got a conspiracy here! 😂

[@evarialol4525]

So everyone who has ehlers danlos, this is just a tip: So about a week ago, I had really bad back problems. Now, this is all part of ehlers danlos. But, I strated wearing shoes that have support in the house. This may seem silly, but it helped my back a lot. I have also noticed a pain decrease when it came to Achey legs, feet, ankles, knees, etc., and I do recommend wearing shoes that have support in the house. It helps a lot with the pain. Just like me, my dad has eds. He's always told me to wear shoes in the house,and it always felt weird and I hated wearing shoes in the house. My dad ran an experiment where he wouldn't wear shoes for a week, and his pain got worse. Then he wore shoes the second week, and is pain level decreased. If you don't believe me, try it! Keep in mind, the shoes have to have some sort of support in them. Wearing shoes also prevents problems that you may have later in life with your joints. I personally use berkenstocks, and I reccomend them. Hope this helps y'all!

[@bethennyg3568]

I'm very blessed that I have very mild EDS my mothers is worse and shes had to have many knee and foot surgeries. I'm actually very blessed, and very thankful

[@caitlinglenn6049]

My mum has EDS too, her knees dislocate all the time! She can't get up quickly are her knee pops out, she had to be on crutches for a while too. I might have it as it's genetic, my doctor has told me to wait a bit then go back if my joints are still really painful. I'm glad you've done this video,I've never seen someone younger with it!x

[@avahill3946]

I recently heard of EDS from a friend who was recently diagnosed, and I had been having symptoms similar for a few years and we'd been to multiple doctors, tested for arthritis and such and everything was negative. When I heard of this, it seems so relatable hearing about it from people who have it first hand like you and my friend but when I go online and read all the different types, it doesn't sound like me at all. so it's very hard to decide what of my symptoms are normal and what could be possible warning signs of EDS and I haven't been able to find anything else online that seems relatable. I have extreme joint pain all over my body, abnormally tight muscles, have recently been starting to experience lower back pain, like my back isn't strong enough to support me (I dont have scoliosis) as well as an extremely tight upper back that never seems to untense. I am also pretty flexible and can put my arm around my neck and head like you did in this video but I always thought that was normal? I guess my skin is pretty strechy but I had never considered it to be abnormally strechy. any advice? help?

[@darkfuelfragment6223]

Your abilities are amazing, and tragic at the same time. I think you are like a modern day super hero, doing the impossible...a struggle that most people wouldn't have the courage to take on, and keep on going. I know I'll never meet you, but it's nice to know.. somebody like you exists.

[@randysan4]

I feel so stupid I asked earlier why the feeding tube on one of your streams and got blocked. Now I know what EDS is. Your an amazing young woman keep up the teaching sooo others can understand. And I thought I had problems with my Diabetes and Heart Disease!

[@amyleefisher52]

Randy Sanders sorry you got blocked my admins just get frustrated with people asking all the time, it does getting annoying but I understand the curiosity. Thank you for taking the time to watch the video tho 💖

[@ClaytonB5432]

Glad to see you raising awareness for this! I have type 3 EDS, too. I'll be a subscriber from here on out.

[@kallimarissaa]

i’ve never heard of this nor have i met anyone with it, but i’m glad i’ve been now informed lmao thank you

[@moyzies]

I'm in the process of getting diagnosed with EDS (also Lupus). I don't have the stretchy skin (only on my feet), but my joints are super loose, my muscles are super tight; my hip will dislocate or it'll feel like the bones are punching each other violently on a regular basis. This has been going on since I was maybe 2, but it's gotten worse as of late (I'm 19). Stay strong and fabulous.

[@nikkix2221]

i have EDS type 3 too as well as POTS, my whole family has eds and we knew i had it too, just from general symptoms and considering i had a lot of serious health issues when i was a baby that was due to my EDS but i was only officially diagnosed in march when i was also diagnosed with anorexia. having anorexia with eds and POTS is not a good combination. i had an NG tube for re-feeding but then i had to have it longer because due to my eds i’ve always had stomach problems and having anorexia made that so much worse to eat. the only reason why they have classified it as anorexia was because i physically couldn’t eat due to my eds, i would feel so so so sick and then it turned into anorexia because the more i couldn’t eat the more i stopped trying and then it became obsessive. i am 14 and i am now homeschooled because i’m not well enough to go to school this year. i’m sorry you have EDS and POTS so i don’t want this to come across the wrong way but it’s so so nice to find someone else who has the same symptoms and condition as me, especially because out of all my family with EDS, only one other family member has POTS with it (i don’t know the right word to use because it’s not nice you have it) to have someone who has the same type of EDS and someone who has POTS so thank you for uploading this, i’m definitely subscribing ❤️

[@basicallyimhannah13]

Nikki x that’s so sad 😞

[@jackibear]

oh my fucking god im crying. i just found you and im freaking out. i also have POTS/Dysautonomia, EDS, and i actually have a GTUBE!!!!!! i used to have an ngtube. but omfg im so freaking happy i found you this is just so amazing to have found another person on youtube or just social media in general who is just as open like this about our illnesses 😭❤️❤️❤️❤️

[@daniellamohr5017]

I was born with EDS and I am 12 and I also have type 3. When someone runs into me at school it freaks them out because the landing is so soft. When I stretch *bends legs over head* stranger: HOW DO YOU DO THAT!! me: oh this, idk I just can. ( And I was diagnosed a little after I was born because my mom, my grandma, and my great grandma also have it)

[@NotSoNeurotypical]

I love your channel so much, you inspire and make me feel okay about spending some days in bed. I have just been told I likely have fibromyalgia and pots, I am 13 (14 in 5 days) and I also have autism :) thank you for existing

[@peachi3sweeti3]

Not So Neurotypical you should look into seeing if you have EDS, a lot of people with EDS are misdiagnosed with fibromyalgia!

[@NotSoNeurotypical]

Molly モリー I have been tested for EDS and they said they’re pretty sure I don’t have it, if they don’t find that I have fibromyalgia or any other chronic pain syndrome I will most likely be tested again

[@sparkymarky1906]

Not So Neurotypical 13 is so young to have fibro Big hugs

[@NotSoNeurotypical]

I am 14 now but have been told I definitely have fibro and dysautonomia :(

[@sparkymarky1906]

Not So Neurotypical oh sweety so sad. I got tested for dyistonia. But came back ok

[@eowynnelson2977]

Hi I just wanted to say that you led me to my eds diagnosis! I love what you do and you are amazing! Love you!

[@peanutthenut1920]

You look like Jessie Paige (another KZbinr) but with black hair and a British accent you're both so beautiful :) xx

[@oliviakelley6590]

Here comes The sun doo doo OMG SHE LOWKEY DOES

[@nightmaremonkey4353]

Here comes The sun doo doo true I do agree

[@zma8789]

I really like learning about all these Syndromes and Disorders from people who actually have them because I can understand them better. It's a lot easier to learn about these things from people who understand what it feels like instead of people who don't (Ex. Doctors, Teachers, etc). I have Depression and Anxiety. And my best friends/family members don't understand how it feels like to have an anxiety attack or to deal with depression. Not even my mother understood when I had my first anxiety attack and that was a terrible experience to go through.

[@dawna4185]

wow....this is such an informative video! thanks for sharing and helping us understand what these conditions are...all the best xoxoxo

[@djlawlz4041]

I’ve used this so many times to explain EDS to family.

[@maiadetlefsen6158]

i have eds and pots too it makes me so happy to see people sharing their stories

[@annegreenwood3624]

it's not a fun illness but finding humour each day helps

[@dorishaw7831]

I have EDS, IBS w colitis, raynauds, POTS, & Addison’s and i never knew there was a whole community/awareness for it. Let alone that there was an awareness month and T-shirt’s. It really is so hard to explain to people how much of a struggle EDS can be to deal with because people hear “oh you’re flexible that’s cool” or “ well having such soft delicate skin must be nice” and they don’t understand how painful and frustrating it can really be. Having your joints basically falling apart is no walk in the park. But I’m so glad i found this video so i can just refer people to it when i don’t feel like giving the EDS spiel to every new person that enters my life😂

[@SuperFunny1111]

I have elhers danlos as well and I hate having it i have the muscular form as well as slight vascular and it's caused severe hyperextension and it also cause me to have a brain condition called pseudotumor cerebri. I struggle with double jointedness that is painful I hyperextend really badly in my knees it causes my hips and ribs to dislocate my spine and pelvis come out of place and alignment constantly when I'm home from school I'm at the chiropractor every week to get everything put back in place. My knees pop out of place when I climb stairs and it is horrendous. My muscles in my wrist has decided to stop holding the bone into the joint so I live with my wrist in constant dislocation. I wish there was a cure for it and not just trying to fix the symptoms. Mine makes me super flexible. I also live with Psuedotumor Cerebri and I've been struggling with it since seventh grade and I have had to have brain surgery, several MRIs Kay scans and countless spinal taps. Also because of it I have severe acid reflux. I was diagnosed with EDS when I was seven. I have so many braces it's ridiculous. So thank you seeing someone else with EDS succeed gives me so much life and hope.

[@davevan7265]

Do you know who else has eds in your family? In my case it's just me and my mom. I've always found that strange but I guess that's what makes all of us unique. I really enjoyed the video and it's awesome that you shared your story. It makes me feel like I'm not alone!

[@mirandacastelan8022]

Much respect to you! I couldn’t imagine living like this and being constantly tied down. I do believe that there are special places in heaven for people like you ❤️ you’re very strong and make it look so easy! Much love from Davie, FL

[@summerjones2424]

I have EDS as well and you really inspire me, thank you so much. 😁

[@jennifertustin6629]

Summer Jones I also have EDS she’s such an inspiration ❤️

[@thinkingimpaired5663]

Amy you're such a wonderful teacher of EDS, etc. Great video

[@miranduri]

What a brave young woman you are.

[@speadskater]

Yep, I do everything in this video,. Stretchy skin, flexability (primarily dislocating sholders, one hip), etc. I'll probably go to the doctors to get it checked out as soon as I have healthcare. I could dislocate my shoulder since I was 5 I think. I'm 28 now.

[@Miniflower25]

She is a Brave soul 🙏 RIP

[@rosiewebb1383]

Happy eds awareness month!

[@SnoWhiteSally]

I have type 3 too, but I don't have stretchy skin (I was told that isn't always a factor with type 3) Just the suppppper loose joints. I also have really (abnormally) tight muscles, which paired with my loose joints hurts so bad. I'm not AS flexible as you, but still hella bendy. What's your worst joint? Mines my jaw, pelvis, hips and neck. Oh and fingers... they're all evil lol. I have POTS too. Urgh, they're such exhausting conditions. Do you wear compression stockings? I didn't realise that's why IV's don't last in me. Do they also find them hard to put in for you? They never manage to get a vein and end up calling in the super trained nurses to do it - and they usually end up in my wrist as no where ekes works.

[@dawnkeith4444]

SnoWhiteSally I actually have the same problems with my veins some of people actually get a PICC line and some people actually get a port I've been begging for a PICC line because it just hurts so much giving every nurse three tries before they get somebody else and I hate having to take an ICU nurse away from her station just to put an IV in me.

[@amyleefisher52]

SnoWhiteSally my worst joints are my knees, shoulders, wrists and fingers. I do wear compression stockings yeah pots is the worst xx

[@SuperFunny1111]

SnoWhiteSally mine always fall out or get ripped out or they blow a vein

[@SuperFunny1111]

SnoWhiteSally i

[@rebeccajayxo1197]

SnoWhiteSally | Im exactly the same as you hun ❤️

[@meghansmith5433]

I wanted to say thank you for posting this, I got diagnosed with EDS yesterday because I got my doctor to send me to a specialist after watching this video :) my doctor had always just told me I had hypermobile joints lol

[@Karrambide]

Inspiring story! My mom is a cancer doctor, so because she is in the medical field, she would know about it.

[@lilyellavlogs6916]

I have quite sever eds and it's great to see someone els spreading awearness

[@melinebastos]

Oh I am chocked/surprised because your video was in my suggestions list so I watched it and now, I see in the suggestions list another video from you with wrote Ehlers Danlos! I am french and I live in France (so my english isn't perfect) and I don't know if in your country there are a lot of poeple with EDS but in France, and on the social medias there isn't a lot! So this is why I was chocked/surprised 😊 I wish you a loooooooooot of courage! 😘

[@hannahfrogcamp2951]

It took my doctors 4 years to diagnose me. Month ago i got my diagnose. EDS classical type. The best thing about it is that i can't exercise on PE lessons, so I go home earlier

[@sonias9722]

this is probably a stupid question, but do people with eds age "earlier" than others? I mean because of the weird collagen.

[@verawaters8787]

Sonia S nope, kinda the opposite! Because we have such “doughy” “velvety” skin, we often look very young as we get older.

[@solarhawk77]

Yep! I look 10-15 years younger than I actually am... because of my EDS.

[@MetroStationluver18]

It’s not always true. Especially if you have vEDS. Which is type 4 Vascular type EDS.

[@certaindeathawaits]

vEDS can cause the hands to age quickly

[@ChemicalViruS004]

A lot of us actually seem more young than we are but for example for me my hands are like an old lady, I'm a hEDSer. Of course this is different for everyone

[@mirandasanchez1841]

I have just started watching ur channel which I think is great and I actually have that and gastro and I have had it since I was born and just found out like a year ago and you doing all these things on ur channel with ur life and stuff is really great and I wanted to say you have actually helped me with alot of stuff that has happened for these last few months and I really like ur channel it's great

[@JamethTate]

My mums best friend has EDS. really insightful to see someone elses problems with it

[@JessiCat1980]

I know this is off topic, but you are so pretty! I dye my hair black because I love dark hair so much, and it's seldom to see Caucasians who have naturally black hair. At first when I saw you in my recommendations, I thought you were Amy Lee from Evanescence, who I adore! Lol Anyway, I have watched a few of your videos now, and I think you are such a courageous, strong, and beautiful lady! You endured so much, and my heart bleeds for you. I can't say enough good things about you. You are an inspiration! Hugs and love❤❤❤👍👍👍

[@abiA5]

I have EDS and POTS too! I have severe joint issues, paticularly in my legs, I haven't been able to walk for 18 months! I also have GI issues too. It's given me a cataract, some bad bleeding issues, my bones break from things like flushing a toilet, my bones have the density of a 60 year old, my shoulder won't lift up anymore, I have AFO hinged splints, am permanently in a knee immobilising brace, my jaw keeps dislocating and if I'm brushing my teeth and it does it I can spend over an hour trying to get the toothbrush out of my mouth, my legs are the most severley damaged, my thumb has muscle bleeds as does my knee regularly. With my POTS my heart rate sits at 135 and when I'm ill it's a battle to keep it under 200. My blood pressure is so low that bending over will send the room spinning and go black. My blood pressure can be so low I have to stay in bed for a few hours; I can't have a shower until I know that I'm not going to pass out getting in or out of the shower as I've gone dizzy and fallen out so many times and some have caused irreversible damage. If I know it's going to not be safe for me to have a shower without anyone around then I'll have to shower when someone's home with me if I fall. I require a fair bit of care from my parents and I'm 22. They have to push my wheelchair if I'm in that instead of on crutches as I can't weight bear on my left leg, they do my lunch, my dinner, carry everything, get my meds, take me to all my appointments as my eye sight is too bad to drive, mum has to do my hair everyday, change my bed, warm up heat packs and do my drinks. Last year in July 2016 I was struggling with my legs but was still able to work even though I could only walk 20 metres, until one day my leg was so bruised and painful I had to come home sick, and have been off ever since and won't be able to return to my job. I'm in agony and am exhausted, I can't even walk so I'm stuck at home. Car journeys are so excruciating that I only leave the house for hospital appointments. I can't absorb iron or calcium so I'm always anemic and have poor bones, my immune system is weak from 22 years of anemia, a simple kidney infection put me in hospital in 2014, I was so ill that I was losing 1-2kg per day. EDS is like a nightmare that keeps getting worse, there's more of me that's broken than there is working. EDS is tough. I hope you're well 🙂

[@annv6781]

Abigail Ash Lots of love to you!!

[@_andreamargarita9618]

I really need an honest opinion on this. I have no idea about my family history I was adopted and I heard you can only check for EDS based on your gene history. But I have the problem of frequently passing out. I completely black out almost every day if not more than once a day. I have always been told it is very difficult to find veins in my skin. I have hyper extensive joints and like my knees are so bad I have all kinds of problems like torn ligaments patellar tendinitis and my hips pop out all the time and I have to pop them back. The doctors always told me it was just dehydration because my birth family didn’t feed me like at all and I was a failure to thrive. And I know I don’t drink a ton a day but a lot of people drink less than me or the same as me and they’re fine. I’ve had a lot of problems with different organs and I had to have gall bladder surgery. There’s just been so much wrong with me and I understand you’re not a doctor but I want your opinion on if I should bring this up to my doctor to be checked for? Or if it could really just be dehydration and sensitivity to different things.

[@wendyowensredfern4807]

If you are in the US. Don't be surprised if they tell you there isn't a genetic test available. As of a year ago nothing had been approved. Don't give up advocating for yourself. Currently I'm the only member of my family who is diagnosed that I know of. I have 2 disorders that have genetically popped up and I've been the only recipient of. After 20 years of searching I finally discovered that the I wasn't wrong, things were tied to my hypermobility. Things are much worse now, with allergies, gastrointestinal issues, torn tendons, dislocations, subluxations, chronic migraine and body pain. It makes you adjust your life but you don't have to stop living it. I wish you a strong support system and the best of luck on this journey.

[@makaylabyrd1431]

I know you posted this a long time ago !! But i don’t know for sure that you have EDS but it does sound like you have POTS you can have POTS without EDS !! I hope you get answers or have already gotten an answer

[@kbellmurray]

There is an article that was published recently about her death and it did not even mention hEDS was at the root cause, or that Amy had it at all.

[@yelhsa._.]

Where is this article?

[@peachi3sweeti3]

I'm looking into a possible EDS diagnosis because I have a lot of the symptoms and my joints hyperextend themselves all the time, but I've only ever fully dislocated once, are there people with EDS who don't have frequent dislocations?

[@amyleefisher52]

Molly モリー yes not everyone dislocates it really depends on the severity and also eds effects everyone differently x

[@gboneske]

i dont dislocate, but i have it.

[@solarhawk77]

I have EDS and I only get partial dislocations... where the joint isn't all the way out of position.

[@LadyAhro]

Subluxation (partial dislocation or joints shifting slightly out of where they should be) is a major symptom and one that plagues me all the damn time.

[@marsiepanko]

モリーMolly I just have subluxations a lot. My skin doesn’t stretch but I’m just hella bendy and have really bad hips. Everyone’s different so I suggest you get a diagnosis.

[@kaycestone]

I was just diagnosed with EDS and also found out I have a hole in my spine. I understand what you go through.

[@harleyflower760]

I have EDS hypermobile and vascular as well as Chiari Malformation! It's nice to see a fellow zebra step up and talk about this!

[@emma7585]

having EDS/hypermobility is both a blessing and a curse 😂😩

[@veronicaimmethun5928]

Why don't you have a PEG tube? As someone who works in a hospital, I've only seen NG and NJ tubes be recommended and used temporarily.

[@prevengeix8551]

i do not have EDS but i do have hyper motility. my body does produce less collogen but not to your level. my skin is stretchier than yours and i can pull my elbows completely behind my head to touch my other shoulder. when i was your age i could pull my leg around my side and lodge it under my ribcage. the main difference is my joints pop right back in. a partial dislocation in my knees tend to pull on the muscles and nerves and can be extremely painful. stay strong as i see that you are.

[@starryeyedkitty4533]

I just got really excited when I heard you say POTS and dysautonomia because I have dysautonomia and I keep being surprised when I'm not the only one!

[@cammismith8756]

StarryEyedKitty Same!!!!!

[@daisyalida652]

I have hEDS and i’ve only found a name for it recently. it’s good in a way to see other people who are in the same boat 😅

[@Elle-tl7mb]

I have EDS 3 with a suspected vascular cross over and it’s a horrible condition I can’t imagine what you have to go through tho I love your channel and videos 💕

[@tayagrove]

i was diagnosed with EDS a few years ago and i’ve never met anyone who even knew what it was ! most of my doctors had never even heard of it. i’m a ballet dancer so we always thought i was just naturally flexible until it started causing a lot of pain. i also have POTS. I kinda freaked out a little when i saw the title of the video because i have just never heard of anyone else with it !

[@tayagrove]

mine is type 3 as well

[@chellym8]

EDS can be so painful hey, good to know of someone else who also has it, Zebras for life! 💜💕

[@erikaleonard78]

Thank you for your videos, I have been having my daughter's watch your videos. All three of us have EDS type three with a thousand other side issues.

[@flamingcupcakesitstrue3783]

I have Eds I’m 12 and I feel so bad for you and I just wanted to say that your a inspiration

[@leonamckenzie2301]

You are such an inspiration I have hEDS and you honestly give me so much hope and help me get on with my day! I love you ❤️

[@amyleefisher52]

Leona McKenzie thank you! This means so much to me! Love you too 💖

[@Lexicoley1826]

I’ve also got EDS. Also kidney failure and several other disorders that have caused me a lot of pain and suffering throughout my life. 2 kidney transplants and 15 years of hemodialysis.

[@helenabekele2765]

I recently saw an orthopedic doctor, and she said I might have eds, so I'm trying to learn as much as I can. It's sucked so far bc I can't do a lot of the things I used to, but I'm starting to get used to it

[@leahsantos746]

I just came across your channel... Happy new year!! You are so brave speaking of EDS which I've never heard of until tonight.. I hope you don't mind me asking but you can't have any food at all? And if not does it bother you knowing most everyone around you does? Thank you for sharing your story with us

[@fiona1396]

i have ehlers danlos, from my dad, a lot in my hands, feet/ankels and hips (i don't have the stretchy skin thing though) and i'm a dancer. I remember a doctor telling me "dancing might not me the best hobby for you" but my petty ass kept dancing anyway and it's actually helped quite a bit by strengthening the same areas that are hyper flexible. so like follow your dreams or something idk

[@sjcobra84]

My partner has this and it's left me saddened. Trying to learn more about this so I can better understand this and take care of her.

[@jadekimmm2767]

Love this I can show people so they understand more x

[@amandahurley5876]

I just found this video! I have type 3 as well with all the classic symptoms, hyper mobility, stretchy skin, joints that dislocate easily/ often and “soft velvety” ski . I’m even often covered in bruises that I have. No explanation for. I know easy bruising is common is other types, not type 3, but I’ve quite literally been tested for everything else that can cause the bruising with no answers.

[@XxXMoonlDragonXxX]

Omg, you're the first other person who has EDS. My boyfriend currently suffers EDS, and so is his sister and his mother. His sister is currently in a wheelchair 'cause all her joints just kinda... Dislocates, like you, but she can't walk anymore 'cause her legs are too dislocated now. His mom is miraculously alive although her "asthma" (which is actually EDS) should have killed her. And finally, he has a sort of EDS that has yet to be discovered so he's currently treated as a "test subject" (yay us...) and it's really hard for him 'cause the "normal" treatement that they suggest doesn't work on him. (Like that Frog combi, and that oxygen thingy, jesus and so many other things...) I really understand how hard it is since Docs hasn't found a way to really "cure" or "treat" this correctly, so you're truly an inspiration 'cause you're absolutely mesmerizing, and beautiful and a true inspiration. I mean, you're doing video and you seem so happy. I guess that's the most important thing. Ah jesus, like your video made me cry. True to God, you're really the first person who understands and is living the same situation as my boyfriend... And well, it feels good to be "understood". Many people here (FR) just look at EDS as being a "lazy person syndrome" depending on what you have exactly. So it's hard on a daily basis to explain to everyone why my boyfriend acts the way he is sometimes, why he can't stand up sometimes and etc... It feels good to truly be understood... Again, thank you for this video. You truly are an inspirationg. And you're amazing.

[@amandachoglund]

I also have EDS! Some days I’m in a wheelchair, som days I can’t get out of bed because of the pain etc etc. I know exactly what you go through! Keep fighting, beautiful zebra!

[@hannahgullifer7209]

OMG I have EDS and I always thought I was just being a big baby for buying all of the braces!! This definitely puts that to rest. 😂😂