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
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
@@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.
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.
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. ♡
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. 🥰🥰🙏🏼🙏🏼🙏🏼🥰🥰
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!💚
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 ❤️
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
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.
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 💖💖💖
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!
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.
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!
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!
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 💖
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
"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.
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.
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.
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
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.
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.
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
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!
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 🤗
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 ❤️
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!
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
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.
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
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.
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)
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?
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
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
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.
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!
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.
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
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! 😘
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
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 😭❤️❤️❤️❤️
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
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😂
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
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❤❤❤👍👍👍
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.
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
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 !
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 🙂
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.
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.
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 💕
I have EDS too (a “weak” for of it even tho it’s still obvious) but my skin is not as flexible on the face. The worst symptoms where between my 12-14 years. I do get a lot of dislocations and often get a lot of muscle lesions. If you have EDS (or suspect to have) please don’t flex your muscles to much, is not good for you and you can hurt yourself seriously. Take care.
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.
In health class when I was young, I was taught not to put anything in my ears that's smaller than my elbow. You would've been a star in that class, getting your elbow nearer to your ear than anybody.
I'm 38. I was just diagnosed last year. HOWEVER ... I've known I was "different" since around 1993 or 1994. I've NEVER EVER broken a bone (thank goodness I think?!) but I've had many many sprains, back pulls, etc. etc. Thank you for this video... it's very informative.
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
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!
I’m the opposite, my knees and ankles are pretty good at the moment, only the odd dislocations, mostly subluxations (apart from my kneecaps little dislocating devils). My HIPS on the other hand, my god, they dislocate at the drop of a hat, so many times a day. I’ve been on crutches and a wheelchair because of my hips for the last 4 years and have been told they’ll be permanent mobility supports as my hip dislocations can’t be fixed. It’s not that bad though, I get to do so much more now that I have those supports. Although it’s restricted some things, it’s also opened up a lot of things that I now can do while protecting my hips,
I have EDS type three and vascular. My skin is super stretchy however, I cannot do certain things that others with EDS can, like putting my legs behind my head. My ribs slip out of place constantly and the popping sound is loud enough that people look at me like I’m a bag of popcorn 😂 I’ve had people ask me if it hurts whenever it happens or if there is pain whenever my shoulders or knees dislocate. I am just starting to have lung problems and have had digestive problems for the past five years. The bottom part of my lungs are paralyzed as well. Much love to you 🧚🏻♀️
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
How are you going?
Thats sad that your doctors couldnt figure it out on their own for that many years. hope all is well.
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
@@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.
i can do it too but never heard about such condition never diagnosed and didnt had any negative effects. weird
Rest in paradise gorgeous 😭
3:55 she just popped her arm back in place like it was nothing, respect!
Captain Sardonyx I started screaming lol
Seriously something that happens on the daily for people like us. We're pretty bad ass
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
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
Ender Bro ii
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.
Who else started stretching their skin ?
lmao
Me😂
so glad it wasn't only me....
Janae Allen hahahah I did
Lol me 😂
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. ♡
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?
leah that would be awesome!!!!
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. 🥰🥰🙏🏼🙏🏼🙏🏼🥰🥰
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!💚
And btw you’re gorgeous!!!
haha i loved the chewing gum-hair tie analogy
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 ❤️
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
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.
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 💖💖💖
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!
She really just dislocated her shoulder like it was nothing 😧
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.
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!
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!
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 💖
Wow I love how positive you are even though you have multiple chronic illnesses. You really inspire me.
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
"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.
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.
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.
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
my problems look super small compared to what some people go through daily, may god help you recover and bless you forever.
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.
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.
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
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!
You look like Jessie Paige (another TH-camr) but with black hair and a British accent you're both so beautiful :) xx
Here comes The sun doo doo OMG SHE LOWKEY DOES
Here comes The sun doo doo true I do agree
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 🤗
You kinda look like Noah Cyrus
Coh Rah not even close bro, Noah is ugly as fuck
Coh Rah please don’t put that image in my head
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!
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 ❤️
Nikki x that’s so sad 😞
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!
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
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.
Glad to see you raising awareness for this! I have type 3 EDS, too. I'll be a subscriber from here on out.
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
wow....this is such an informative video! thanks for sharing and helping us understand what these conditions are...all the best xoxoxo
Only Amy would use a chewed piece of chewing gum as an example 😂❤️
Becca DoesMusic Ahaha I was pretty proud of myself, I thought it was a good example 😂
alex living chronically really who? 😱
My physiotherapist actually used the example of chewed gum to explain EDS to me!
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.
I thought it was a clever example. Well done, Amy!
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
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)
Amy Lee looks a lot like Amy Lee (Evanescence)
sick during the day but a professional singer during full moon
monicka lynn she also looks like that Amy lee 33 girl everyone used to watch play minecraft.
Send this into Shane Dawson stat! We’ve got a conspiracy here! 😂
Okay, did she say "hair bubble" because that's cute af. 😂
Samantha Kelley hair *bobble :) it's used in the Uk quite a lot if you didn't know 😁
K Bear awh, regardless it's cute. 😂
Yeah I say “hair bubble” all the time❤️
Hair bauble.
It is cute. Hair bobble ❤☺. Bobbles are miscellaneous things that are usually pretty. Pretty accessories. Like hair things or earrings. Love it. ☺❤
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?
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
Not So Neurotypical you should look into seeing if you have EDS, a lot of people with EDS are misdiagnosed with fibromyalgia!
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
Not So Neurotypical 13 is so young to have fibro
Big hugs
I am 14 now but have been told I definitely have fibro and dysautonomia :(
Not So Neurotypical oh sweety so sad. I got tested for dyistonia. But came back ok
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.
Vaishali shiver chocolate cinnamon chocolate strawberry shortcake cake 🍰 with doctor 2:08 Diced tomatoes 🍅 😊 2:54
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!
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!
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.
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
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! 😘
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
I’ve used this so many times to explain EDS to family.
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 😭❤️❤️❤️❤️
I have EDS as well and you really inspire me, thank you so much. 😁
Summer Jones I also have EDS she’s such an inspiration ❤️
Amy you're such a wonderful teacher of EDS, etc. Great video
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
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😂
it's not a fun illness but finding humour each day helps
Happy eds awareness month!
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
i have eds and pots too it makes me so happy to see people sharing their stories
What a brave young woman you are.
She is a Brave soul 🙏 RIP
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.
Where is this article?
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❤❤❤👍👍👍
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.
I was just diagnosed with EDS and also found out I have a hole in my spine. I understand what you go through.
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!
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
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 !
mine is type 3 as well
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 ❤️
Leona McKenzie thank you! This means so much to me! Love you too 💖
Inspiring story! My mom is a cancer doctor, so because she is in the medical field, she would know about it.
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 🙂
Abigail Ash Lots of love to you!!
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.
having EDS/hypermobility is both a blessing and a curse 😂😩
My mums best friend has EDS. really insightful to see someone elses problems with it
I have quite sever eds and it's great to see someone els spreading awearness
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.
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 💕
I have EDS too (a “weak” for of it even tho it’s still obvious) but my skin is not as flexible on the face. The worst symptoms where between my 12-14 years. I do get a lot of dislocations and often get a lot of muscle lesions. If you have EDS (or suspect to have) please don’t flex your muscles to much, is not good for you and you can hurt yourself seriously. Take care.
I have Osteogenesis Imperfecta, which is a somewhat related disease. Just wanted to share, that the carnivore diet helped me a lot.
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.
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.
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. 😂😂
In health class when I was young, I was taught not to put anything in my ears that's smaller than my elbow. You would've been a star in that class, getting your elbow nearer to your ear than anybody.
I'm 38. I was just diagnosed last year.
HOWEVER ... I've known I was "different" since around 1993 or 1994.
I've NEVER EVER broken a bone (thank goodness I think?!) but I've had many many sprains, back pulls, etc. etc.
Thank you for this video... it's very informative.
Love this I can show people so they understand more x
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
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 😅
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!
I’m the opposite, my knees and ankles are pretty good at the moment, only the odd dislocations, mostly subluxations (apart from my kneecaps little dislocating devils). My HIPS on the other hand, my god, they dislocate at the drop of a hat, so many times a day. I’ve been on crutches and a wheelchair because of my hips for the last 4 years and have been told they’ll be permanent mobility supports as my hip dislocations can’t be fixed. It’s not that bad though, I get to do so much more now that I have those supports. Although it’s restricted some things, it’s also opened up a lot of things that I now can do while protecting my hips,
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.
Hope you get better💪❤️. We know you can do it, Nothing but Respect!
Love this! You are incredible girl! Keep up the fight!
I have Eds I’m 12 and I feel so bad for you and I just wanted to say that your a inspiration
I have EDS type three and vascular. My skin is super stretchy however, I cannot do certain things that others with EDS can, like putting my legs behind my head. My ribs slip out of place constantly and the popping sound is loud enough that people look at me like I’m a bag of popcorn 😂 I’ve had people ask me if it hurts whenever it happens or if there is pain whenever my shoulders or knees dislocate. I am just starting to have lung problems and have had digestive problems for the past five years. The bottom part of my lungs are paralyzed as well. Much love to you 🧚🏻♀️