My partner has this and it’s incredibly hard for him, not only is his skin incredibly stretchy but indeed his joints are able to dislocate very easily. There’s times where he literally just wakes up and has dislocated finger or joint from the way he slept. It’s terrible to see the pain he goes through. I never really knew of this disease until him, so I think spreading awareness is great. It truly affects his every day life, and overall quality of life. I wish I could take the pain away from my baby 😢
I relate, my boyfriend has it aswell. The vascular kind. Its really hard watching him go through some of the things he has to put up with. I just wish i could make it stop for him. Your not alone❤
My cat - avatar - has feline cutaneous asthenia and I was quite surprised to read its related to EDS in humans. She has the stretchy skin/fur, gets holes, can't be stitched (it tears through) and you can't scruff them as the underlying tissue tears away. I never knew there was something that could be so closely related in humans and animals.
@@leafortner I'm not 100% sure why she has a port but I have a port because I get IV fluids for something called dysautonomia. My veins were really hard to find and usually took multiple sticks to get a good one. I was also getting scarring in my veins.
I met a stranger who has this, she was crying and looked in pain. We asked if she was okay. She told us about this condition. whenever this happened to her she will tear up coz it is so dang painful and she has to put it back into the socket. She told us one of her bestie actually said to her face that she’s acting out and over react as she will tear up everytime this happens. She tried not to cry and hide her pain whenever this happened, she scared people will judge her. Dang. Thank you for sharing this. 😢
I’m in the hospital right now because of vascular complications of my EDS, and I’m an only child. My own father doesn’t believe me and I’m about to turn 30 years old and he told me just a couple of days ago that he doesn’t care if I live or die. He refuses to visit me in the hospital and the night I had to be taken to the hospital I had to call a friend to drive me because my father refused. Unfortunately I live with my parents because my mother has a cancerous brain tumor with cancer also in various places of her body and I moved back home to be her primary caregiver. Last Christmas she had brain surgery to remove part of the brain tumor but it has tentacles that have grown all over her brain but they did reduce the tumor from the size of a Baseball to a Golfball
And so do I. Thank your God because you and your Mother were born with a physical disease. Your father is already dead inside. When he ages he will be all alone and don't feel sorry for him. I am serious. Forgive him but don't forget.
@@kellydavis1341I care if you live or die and I'm really sorry your own father said that. My mother said I shouldn't have been born. I'm 52 now and she and I haven't seen each other in 22 years. Sometimes we need to cut ties with someone even if it is a parent. Hang in there and stay strong. You're not alone in spirit. ❤🙏
@@kellydavis1341Not making excuses, but was also thinking that your dad might be overwhelmed with your mother's sickness and just life in general. We tend to say hurtful things when we're scared and it's usually aimed at the people we love. It sounds like he cannot handle one more thing. I hope he's not like that all the time and I hope he didn't mean what he said .
I have fibromyalgia and i cannot imagine this pain my god thats crazy :( the amount of pain people go through without ever knowing just by looking at them this past year has shown me how strong and resilient people are it givws me faith to see others fighting too ;( were not alone
I was diagnosed with EDS in 1986 before anyone had really heard of it. It's absolute misery but it's misunderstood, so a lot of doctors think it's hypochondria and we get treated like crap. If you know someone with EDS, give them a gentle hug. They've been living through hell.
@@batman-sr2px Hi! Thank you for your question. Yes, I was diagnosed using the Beighton Scoring System (not Brighton). I was 8 yrs old, and I kept spraining and breaking small bones, and constantly complaining about joint pain. My foot has been hurting me all summer and my mom took me to a podiatrist. He was elderly and had been a doctor for more than 40 years, so he had seen a thing or two. He discovered I had been walking on broken bones in my foot and ankle for 4 months and needed surgery. He had me perform the Beighton maneuvers and I scored 7/9. He sent me to a specialist in Portland, OR who officially diagnosed me. I was VERY lucky to have had a doctor who knew what EDS was, because back then there were only a handful of people in the whole world who had been diagnosed with EDS. The specialist told me there were only 18 people living with EDS (diagnosed) in 1986. Obviously there were many more that didn't know it. But the numbers have exploded because it's so easily passed on to children (which is why I chose not to have kids.)
I have it. And I can't get a single doctor (besides the Ortho surgeon who diagnosed me) to take me seriously or give me proper care. They all act like I'm lying. It's hell.
Sorry that even doctors don't take you seriously. Have you tried printing out information from a reputable website to share with a doctor who is struggling to believe your word?
Same. I ended up with a CSF leak and then bacterial meningitis and they flat out called me a liar and I've been begging for help and they kept mocking me and saying it kills you immediately or your body kicks it out like wtf are you people talking about and they wrote all kinds of horrible things in my chart like "she believes her body is special and does things others don't do" yeah that's kinda the definition of rare disorder you fu¢&ing morons
I've given birth three times with no anesthesia. My children were 9lbs 4 oz, 8lbs 4 oz, and 9lbs 10oz. Know what? My shoulder dislocation was, hands down, the worst effing pain I've felt in my life. That sh!t hurts!
You don't know how validating it feels to not only see this video but this comment in particular bc everyone thinks I'm just playing it up or lying. It's not fun to need bed rest as a 25 yr old for no other reason than my body just cannot
I’m having symptoms very similar to this! I can’t get a doctor to diagnose or even look into my problems. My knees, ankles, shoulders and now my neck cracks, freezes and a lot of pain. Anyone out there who can guide me? I’m in MA.
@@blackheartxcvii I know the feeling at the beginning of my condition. Not a lot of people understood and now it's to the point I can't keep bones located everything dislocates constantly and I'm getting ready to go to multiple surgeries to try and stabilize the degeneration because of my EDS
It's so difficult to have EDS , in my country there was only one doctor who is diagnosing people like us . I'm 44 years old and I can't even walk to the supermarket 100 meters away and besides my husband everyone thinks I'm just complaining cause I look healthy. It's depressing not to be able to have a normal night sleep etc. Thank you for sharing this. It's nice to know not to be the only one . ( sorry for my poor English)
My daughter started having pain at the end of her 15 the year. She couldn't even make it to her sweet 16 cause of the pain. She is 19 now . As a mother ,it is devastating to me that I cannot help her pain. All I can do is cater to her needs and love her and hold her . My poor daughter. I know what your going through as an outsider. I wish someone could find a cure.
I'm so sorry. I am 44 years old, and I too, can't walk far. I am ready for my left knee replacement and then hopefully next year, my right knee. I will pray for you.
My sister (32) was recently diagnosed with this. And I have to say, after researching it, it explained so much of the problems she’s had over the years!!
I was finally diagnosed with this after years of other diagnosis. I spent years on narcotics till i had 4 joint replacements and spinal surgery. Worse than the pain and surgeries was the fact no family members believed I had problems even after the surgeries. I was even denied disability benefits. This disease like rheumatoid arthritis is indeed the "invisable" disease.
Never tested for eds but I have hypermobility syndrome, a "cousin" syndrome to it. Was dismissed by doctors for years and looked at funny by classmates and teachers for sitting out of gym when I was finally diagnosed. Glad to be out of high school. Still, I'm hesitant to tell people when I'm in pain since I look very normal/like I'm using it as a dramatic excuse.
I have Ehlers-Danlos as well, and I have had minor subluxations in my knee, but nothing ever dislocating. It's awful seeing it, and awful knowing that it could happen to me at any point.
Not if you start working out and strength training now. I had it so bad I was getting subluxations just going about daily life. Now I can hike 7 miles and lift weights without injury. I'm trying to show people there is hope!!! Stay strong❤️
@@laraludwinski8378 Once I have Mitral valve repair, I'll try and do so!! I've been working with a physical therapist so far and it's helped to juggle keeping joints in line
I’m the same. I’ve never had a full dislocation, but have subluxations daily. My heart/blood vessels and nervous system are the worst effected for me, so it’s reassuring knowing that there’s someone else who doesn’t have full dislocations
This is really sad and there are different kinds of EDS as well. Some affect the blood vessels and heart as well. I worked with a patient who wanted to have surgery on their knee due to a dislocation and fracture. However they didn’t want to risk performing the surgery because of the risk of the patient bleeding out. This person had their thumb dislocated at all times, their shoulder was fused, hips/elbows/wrists had multiple dislocations. They had to have crutches to walk with due to the knee fracture, but they couldn’t use them because it caused joints in their upper extremity to dislocate. They did not want to sit in a wheelchair either because they had been on hospice before and felt if they sat, they would begin the process of dying. I was trying to help them rehab in physical therapy. Super sad and really difficult for patients to be active.
@@carenarose6037 I think my experience is a little biased because most people who have it are coming in due to a problem like pain, hyper mobility, or a dislocation. I really don’t see the people who have it and are not bothered by it. The most mild cases patients are dealing with hyper mobility of the joint. Hyper mobility can lead to pain, but it doesn’t always lead to pain. The most extreme case I have seen is described in the comment above. Strength training is really important for patients with EDS so the muscles can provide another layer of support to hyper mobile joints.
@@erikcronrath3858 okay I understand that thank you so much for sharing (: I only asked because for quite some time I've watched videos of people with EDs because I related to alot of what they said but didn't know the actual criteria until recently and know I pass everything I could know without a doctor. I experience alot of joint pain and instability and know some thing don't sit correctly in their joint sometimes but never thought to see if me being hypermobile could in any way cause it or be a symptom of it. Don't want to go and see if i could maybe get tested for EDs or simular things thought if ny issues are way to mild. (I know not connecting it is slightly dumb but I'm young and the pain and everything about me is obviously my normal so yeah)
@@carenarose6037 there are blood work tests you could request and a physical exam screening called the “Beighton score”. EDS is often undiagnosed in really mild cases so the incidence of this disease process is likely underrepresented by current statistics. A rheumatologist is likely the health care professional that will conduct the blood work tests, but that will likely require a referral from your primary care physician.
@@erikcronrath3858 Don't the blood tests only work on the rarer types though? I've had two different doctors look at my beighton score and I pass with a 7 yet neither mentioned or asked any questions about EDs or any other connective tissue disorders they just kinda shrugged it off. Thank you for talking to me btw and offering advice!
I’m 18 and have become pretty severely disabled due to EDS. My heart rate goes to 200bpm when I stand and walk, which makes me pass out, and I had to drop out of school because of the intense pain and fatigue. It caused my intestines and bladder to shut down as well, so I struggle a lot with food and water intake. Yet I always hear “you don’t look disabled” and “you’re too young to be disabled.” Thank you for talking about this
Have you been tested for POTS? My 18 yr old daughter has EDS and POTS. What you describe sounds a lot like what she's experienced. Fortunately we found a cardiologist who specializes in both disorders, and she was prescribed several meds that make it more tolerable.
Just went through my second shoulder stabilization surgery this year due to my eds, thank you for the awareness you are spreading about this disease/disorder because people are so non understanding that disabilities can be invisible
I have the opposite of this; Ankylosing Spondylitis aka the 'invisible disease' it’s autoimmune and causes deterioration in joints and excessive calcium production in the spinal column discs causing the fusion of spinal sections. It is known as “bamboo spine”. Also comes with a myriad of symptoms that have symptoms of their own
This is my first time hearing about EDS and I feel sorry for those who are suffering from it. I can't stand people who say you don't look disabled, they have no idea what you're going through. I have osteoarthritis on both knees and I'm also bone to bone. I use a walker to get around, it's very painful. God bless those that are suffering from EDS. I really hope they find a cure, to stop the pain and keep the bones from dislocating.Sending prayers 🙏 ❤️
Yep...had two back surgeries, 2 partial menisectomies, numerous partial subluxation of my patellas, retinal tear in my right eye and now will be scheduling knee replacement in the spring (or possibly sooner). My finger, toes, shoulders, ankles hurt from arthritis. I honestly am mentally ready for knee replacement. My joints were never as bad as hers, though...so I'm thankful.
I literally have to be aware of how I'm holding myself together when I stand, walk, run, move anything, pick things up, turn, etc. If I'm not consciously thinking about how I'm keeping my joints together, I will sprain or dislocate them from the slightest pressure
EDS is not just elasticity, not just joint pain, not subluxation or dislocation. It can affect how baby moves about the mother's womb, can lead to breech births. It can be associated with immunodeficiency. It can cause mich problems with crumbly teeth. It is a genetic disorder - It can be passed down through the generations.
There are plenty illness, diseases, all sorts of body or endocrine malfunctions, immune system, etc., etc. that look just fine to the unknown eye, meantime we suffer in silence. Good thing to show these issues so more people can understand. 😢
I have EDS, no Dr believed me for years. When I got my dx, I was happy and sad at the same time... I had been resetting my dislocated parts on my own for years.. That pain is no joke.
one of my closest friends has EDS and its been so hard to get diagnosed with how awful the doctors treat them. just because someone doesnt LOOK disabled doesnt mean theyre fine :(
That’s why my mom signed my brother and I up for heart studies at OHSU when we were little and had heart scans every few years since then. Nothing really notable I have a small valve leak that is pretty normal and not causing any problems.
@@clarahensley3106 I'm glad your mom stayed on top of things! And I'm glad nothing too serious has come up for you guys with your hearts besides the valve leak. Hopefully it stays that way
I don’t understand how people say this isn’t real or people don’t look disabled etc. HER ARM IS OUT OF HER SOCKET THATS NOT WHAT AN ARM IS MEANT TO LOOK LIKE
I also have EDS, and for some reason watching this makes me remember a doctor's appointment I had once: I had been doing a lot of research and had come across EDS as a possible diagnosis. I walked into the appointment with a full list of reasons, sources, and everything for why I thought I had it. The doctor looked at me and said, "You don't have the facial structure." Since then, I've been diagnosed with it, but it's just a funny and pathetic memory. When even the doctors don't believe us... Fun times.
A lot of doctors are incredibly uneducated on EDS and don't know there's 13 types. Most types won't change what your face looks like and the types that do barely change the face. I'm sorry you had to deal with such an uneducated fool
I live with this and have experienced that too..not to mention the medical gaslighting of ignorant drs who don’t get that this can and does happen (not as a choice)
Make sure to start physical therapy as soon as possible, even if you don’t feel like it’s necessary!! Having muscle built to protect your joints now will help prevent full dislocations in the future!
I'm officially worried. I was diagnosed withhyper mobility in my 20's. "Loosey Goosey" my Ortho called me. Through the years I've had some weird stuff go on w my body like heart murmur (from prolapse), hysterectomy (from prolapse), my shoulders began rolling out of socket (surgeon who fixed the left one said tendon prolapse), Spinal issues requiring a fusion in my c-spine (neurosurgeon said bone spur likely caused by hyper mobility), lordosis and mild scoliosis (again hyper mobility). Also I was diagnosed w pelvic congestion this May and had over 50 coils put in my pelvis to reroute the pooling blood. Had to get sclerotherapy for the huge veins that had popped out all over my legs. People have always commented that my skin feels like velvet or Jello and I'm always covered in bruises. Until just this moment I thought all of these issues were unrelated. Now I'm not so sure and wonder why no doctor has ever mentioned EDS to me.
I was diagnosed 38 years ago and all my life I've read everything I can get my hands on about this disease. From everything I know and everything you just described, I would recommend that you seek out a specialist right away. It sounds like you could have the Vascular type of EDS, which can be very dangerous if undiagnosed. Not too scare you, but two of my family members died from V-EDS. Please take it seriously and don't stop looking into you find a good specialist. There is a genetic test to see if you carry the Vascular EDS gene. Best of luck to you!
@@tly3 Thank you for your recommendation. I'm seeing my primary doctor in February and plan to discuss this with her. I'm nervous. Not just about this subject but also just found out I have moderate spinal stenosis and I'm going to see a neurosurgeon next week. It's just so too much. I'm very overwhelmed😳
Everyone in my family have EDS. My symptoms started in high school. People constantly saying things like.. if you work out and build stronger muscles, your bones will stop dislocating.
My brother at 29 , 14 years ago and his son at 19 passed of VEDS less than 2 months ago I can say nothing good about this horrible disease. I took my baby brother and nephew. My brother we didn’t know until he passed and my nephew vicious seizures.. We are done 😩💔
I was finally diagnosed at 37. I had already had 4 shoulder surgeries due to dislocationa and they still dislocate to this day if I sneeze too hard. Controlling the pain is nearly impossible. I also have multiple comorbidities. Thank you for helping us get seen.
This was what Mel Thompson passed from. Thank you for spreading awareness about this bc she struggled for years to find out what was wrong & was diagnosed way too late so she dealt with that nonstop which effected her mental health too which is incredibly heartbreaking. She spoke about it once she found out & it was so quickly after, at least it felt that way, that she passed. She was such a lovely person.
What can help strengthen one’s body? And any supplements or natural foods that can help? Hearing of the problems any suggestions to improve health will be so appreciated. Thank you
My bestie has this as ONE of her health problems. She can dislocate a rib by coughing. We met over 30 years ago due to missing over a month of school due to our health issues. The one good thing to come from the daily hell we endure.
Finally people noticing that look of a disability says so little, in this case it is physical, but lets say invisible mental problems, people are going to expect the same like a normal person because they think you are all fine and dandy like the rest of the world.
Man I have the same issue with that shoulder. I went through a period of having it strapped up because it wouldn’t stay in the socket. These days it’s my ribs, I have one that’s pretty much permanently out these days.
It's not a connective tissue disease, it's a collagen disorder. It affects all collagen, not just that found in connective tissue. Hence why digestive and heart problems also occur
My husband has EDS vascular disease. He has very thin skin which causes cuts and bleeding at the slightest bump. It also means his arteries are friable so elective surgeries are not allowed and any emergency surgery could result in bleeding out. It is a very scary disease.
My eldest child has this as well as POTS, a paralytic digestive condition( sorry can't pull the name out right now) but makes eating so difficult cause she/They cannot digest a lot so it either passes through Them untouched or is regurgitated whole. My child is 35 and has gone through sheer hell for years. And yes doctors didn't listen or seem to care and just put it all down to weight and PCOD. Had to have a uterine emblasion(wrong word again but burned away the lining of the uterus to stop constant bleeding and pain that was making Them anemic and sterilized Them.) There is something with Their heart and had a couple brain bleeds. Before any of these other things happened They had to have the gallbladder out due to having dyschonesia and that led to infection and a hernia. It was thanks to that fiasco that the rest of the issues started presenting in ways that let us know there was a lot going on. It still took Them years to get were They are now and unfortunately I don't know any more as They have decided to hate me and cut me out of Their life over differences of opinions on some things and my problem learning how to use different pronouns etc. Doesn't change my love or loyalty. Also Their fiancee has spondylitis and is going through a lot himself. I wish They would let me back into Their life but more important I want help for Them both.
The doctors won't even diagnose EDS much less treat it. I don't know what to do with my pain. They still think it's only one in 5 thousand who have it.
Hey! I have this! I had to stop training to be a power lifter once i was diagnosed.. :( the one i have still and had so much as a kid is extreme "growing pain" they have me crying, and because of my eds the muscles in my stomach dont register food so i have lots of belly issues 😢 your not alone.
Yes, but in my experience despite referrals unless someone in your family has been diagnosed, they won’t even entertain the idea. Which makes it almost impossible to get a diagnosis even if you do have it. I would still seek a referral out, however. It could just be Kaiser being terrible at caring for chronic illnesses.
The diagnostic criteria for Hypermobile EDS and the difference between Hypermobile Spectrum Disorder are available online. The Ehlers-Danlos Danlos society has a comprehensive website with the types of EDS, the genes that cause the different types that have been discovered, and the diagnostic criteria for Hypermobile type. A patient can review the categories and see if they fit. A mild to moderate mitral valve prolapse is required now for Hypermobile EDS so an echocardiogram is needed for diagnosis. The family history or having another memeber of your family diagnosed can be done using the Hypermobile criteria and instructions for adjusting Hypermobile expectations for someone being diagnosed later in life are listed.
EDS life for me. It's the worst because I'm constantly getting comments like "but you don't look disabled "
I would say it is one of the most disabling diseases because it is silent and affects the whole body.
Same
You might wanted to get tested for pots syndrome if you have eds
My sister has pots bad
@@flunterklufin I was saying cause I have it too, tell her I’m sorry
My partner has this and it’s incredibly hard for him, not only is his skin incredibly stretchy but indeed his joints are able to dislocate very easily. There’s times where he literally just wakes up and has dislocated finger or joint from the way he slept. It’s terrible to see the pain he goes through. I never really knew of this disease until him, so I think spreading awareness is great. It truly affects his every day life, and overall quality of life. I wish I could take the pain away from my baby 😢
I relate, my boyfriend has it aswell. The vascular kind. Its really hard watching him go through some of the things he has to put up with. I just wish i could make it stop for him. Your not alone❤
@@hannahcostella5787 my partner also has the vascular variation! Thank you for your kind words. All the love and best wishes for you two ❤️
My cat - avatar - has feline cutaneous asthenia and I was quite surprised to read its related to EDS in humans. She has the stretchy skin/fur, gets holes, can't be stitched (it tears through) and you can't scruff them as the underlying tissue tears away. I never knew there was something that could be so closely related in humans and animals.
So very sorry for all these people with EDS.
You are a damn good wife .
It's nice seeing others being awareness to EDS. It's also nice seeing another person with EDS that has a port, I don't feel as alone.
My wife does too. It makes life so much easier.
o so her port there is for her joints separating.? is it for pain or something?
@@leafortner I'm not 100% sure why she has a port but I have a port because I get IV fluids for something called dysautonomia. My veins were really hard to find and usually took multiple sticks to get a good one. I was also getting scarring in my veins.
@@tea_lex1647 o ok gotcha. thank you
@@tea_lex1647 giiiirl same. I've been in the er for dehydration and the nurses blow my veins till they have no more option but to use my feet
I met a stranger who has this, she was crying and looked in pain. We asked if she was okay. She told us about this condition. whenever this happened to her she will tear up coz it is so dang painful and she has to put it back into the socket. She told us one of her bestie actually said to her face that she’s acting out and over react as she will tear up everytime this happens. She tried not to cry and hide her pain whenever this happened, she scared people will judge her. Dang. Thank you for sharing this. 😢
I’m in the hospital right now because of vascular complications of my EDS, and I’m an only child. My own father doesn’t believe me and I’m about to turn 30 years old and he told me just a couple of days ago that he doesn’t care if I live or die. He refuses to visit me in the hospital and the night I had to be taken to the hospital I had to call a friend to drive me because my father refused. Unfortunately I live with my parents because my mother has a cancerous brain tumor with cancer also in various places of her body and I moved back home to be her primary caregiver. Last Christmas she had brain surgery to remove part of the brain tumor but it has tentacles that have grown all over her brain but they did reduce the tumor from the size of a Baseball to a Golfball
@@kellydavis1341So sorry. I hope life improves for you.
And so do I. Thank your God because you and your Mother were born with a physical disease. Your father is already dead inside. When he ages he will be all alone and don't feel sorry for him. I am serious. Forgive him but don't forget.
@@kellydavis1341I care if you live or die and I'm really sorry your own father said that. My mother said I shouldn't have been born. I'm 52 now and she and I haven't seen each other in 22 years. Sometimes we need to cut ties with someone even if it is a parent.
Hang in there and stay strong. You're not alone in spirit. ❤🙏
@@kellydavis1341Not making excuses, but was also thinking that your dad might be overwhelmed with your mother's sickness and just life in general. We tend to say hurtful things when we're scared and it's usually aimed at the people we love. It sounds like he cannot handle one more thing. I hope he's not like that all the time and I hope he didn't mean what he said .
I have fibromyalgia and i cannot imagine this pain my god thats crazy :( the amount of pain people go through without ever knowing just by looking at them this past year has shown me how strong and resilient people are it givws me faith to see others fighting too ;( were not alone
I have both . And yes - it is agony .
I was diagnosed with EDS in 1986 before anyone had really heard of it. It's absolute misery but it's misunderstood, so a lot of doctors think it's hypochondria and we get treated like crap. If you know someone with EDS, give them a gentle hug. They've been living through hell.
We're you diagnosed by Brighton criteria or something else
@@batman-sr2px Hi! Thank you for your question. Yes, I was diagnosed using the Beighton Scoring System (not Brighton). I was 8 yrs old, and I kept spraining and breaking small bones, and constantly complaining about joint pain. My foot has been hurting me all summer and my mom took me to a podiatrist. He was elderly and had been a doctor for more than 40 years, so he had seen a thing or two. He discovered I had been walking on broken bones in my foot and ankle for 4 months and needed surgery. He had me perform the Beighton maneuvers and I scored 7/9. He sent me to a specialist in Portland, OR who officially diagnosed me. I was VERY lucky to have had a doctor who knew what EDS was, because back then there were only a handful of people in the whole world who had been diagnosed with EDS. The specialist told me there were only 18 people living with EDS (diagnosed) in 1986. Obviously there were many more that didn't know it. But the numbers have exploded because it's so easily passed on to children (which is why I chose not to have kids.)
I have it. And I can't get a single doctor (besides the Ortho surgeon who diagnosed me) to take me seriously or give me proper care. They all act like I'm lying. It's hell.
Same. Gentle hugs to you, fellow zebra.
Sorry that even doctors don't take you seriously. Have you tried printing out information from a reputable website to share with a doctor who is struggling to believe your word?
Same. I ended up with a CSF leak and then bacterial meningitis and they flat out called me a liar and I've been begging for help and they kept mocking me and saying it kills you immediately or your body kicks it out like wtf are you people talking about and they wrote all kinds of horrible things in my chart like "she believes her body is special and does things others don't do" yeah that's kinda the definition of rare disorder you fu¢&ing morons
Same with narcolepsy... and mental health. Medicine and healthcare needs to change
My cousin had the best doctor is Ohio for it
I have EDS and it’s so nice to no I’m not alone with all the problems I have and all the pain ❤
How did you get diagnosed and with who? I feel I have this and need to get it diagnosed correctly…any info is appreciated ❤
First time I have seen anyone mention EDS on a video. Thanks
I've given birth three times with no anesthesia. My children were 9lbs 4 oz, 8lbs 4 oz, and 9lbs 10oz. Know what? My shoulder dislocation was, hands down, the worst effing pain I've felt in my life. That sh!t hurts!
At least your hip didn't get blown out😂......im going to hell😕
I have EDS. The chronic muscle fatigue and bone pain is exhausting
You don't know how validating it feels to not only see this video but this comment in particular bc everyone thinks I'm just playing it up or lying. It's not fun to need bed rest as a 25 yr old for no other reason than my body just cannot
I’m having symptoms very similar to this! I can’t get a doctor to diagnose or even look into my problems. My knees, ankles, shoulders and now my neck cracks, freezes and a lot of pain. Anyone out there who can guide me? I’m in MA.
@@MFSCheri try going to a different doctor
@@blackheartxcvii I know the feeling at the beginning of my condition. Not a lot of people understood and now it's to the point I can't keep bones located everything dislocates constantly and I'm getting ready to go to multiple surgeries to try and stabilize the degeneration because of my EDS
@@blackheartxcviidoes it keep you in bed rest everyday? Arr you able to work?
You have my sympathy because as a nurse I see this debilitating disease. The constant pain and dislocation of joints is unbearable
Thank you. I cannot tell you how much it means to be heard.
Does it affect all the joints or can it be in just the shoulders
It's so difficult to have EDS , in my country there was only one doctor who is diagnosing people like us .
I'm 44 years old and I can't even walk to the supermarket 100 meters away and besides my husband everyone thinks I'm just complaining cause I look healthy.
It's depressing not to be able to have a normal night sleep etc. Thank you for sharing this.
It's nice to know not to be the only one . ( sorry for my poor English)
My daughter started having pain at the end of her 15 the year. She couldn't even make it to her sweet 16 cause of the pain. She is 19 now . As a mother ,it is devastating to me that I cannot help her pain. All I can do is cater to her needs and love her and hold her . My poor daughter. I know what your going through as an outsider. I wish someone could find a cure.
I'm so sorry. I am 44 years old, and I too, can't walk far. I am ready for my left knee replacement and then hopefully next year, my right knee. I will pray for you.
You are doing better than you think with your writing.
Your English is better than most American’s.
The comments to this reassure me I'm not alone in my struggle
So many more people are talking about EDS and POTS. I love it. Shout out to my fellow Zebras!
🦓❤46
Norway
Shout back from a 67 year old zebra ❤🇩🇰
Praying for you all EDS sufferer’s.🙏
My sister (32) was recently diagnosed with this. And I have to say, after researching it, it explained so much of the problems she’s had over the years!!
I get overly excited whenever I see something for or about EDS because it’s nice to feel seen and less lonely
I was finally diagnosed with this after years of other diagnosis. I spent years on narcotics till i had 4 joint replacements and spinal surgery. Worse than the pain and surgeries was the fact no family members believed I had problems even after the surgeries. I was even denied disability benefits. This disease like rheumatoid arthritis is indeed the "invisable" disease.
Um I’ve heard that joint replacements are really not ideal with eds bc it takes so fucking long to heal. Hope you’re doing ok…..
Never tested for eds but I have hypermobility syndrome, a "cousin" syndrome to it. Was dismissed by doctors for years and looked at funny by classmates and teachers for sitting out of gym when I was finally diagnosed. Glad to be out of high school. Still, I'm hesitant to tell people when I'm in pain since I look very normal/like I'm using it as a dramatic excuse.
Don't worry about what others think. Take care of your body!
The elasticity is more than just joints. Effects everything as everything has connective tissue. Effects the organs and nerves too.
I have Ehlers-Danlos as well, and I have had minor subluxations in my knee, but nothing ever dislocating. It's awful seeing it, and awful knowing that it could happen to me at any point.
Not if you start working out and strength training now. I had it so bad I was getting subluxations just going about daily life. Now I can hike 7 miles and lift weights without injury. I'm trying to show people there is hope!!! Stay strong❤️
@@laraludwinski8378where do you start? My body is so fatigued I fear it's too late to begin. I need to start small.
@@laraludwinski8378 Once I have Mitral valve repair, I'll try and do so!! I've been working with a physical therapist so far and it's helped to juggle keeping joints in line
I’m the same. I’ve never had a full dislocation, but have subluxations daily. My heart/blood vessels and nervous system are the worst effected for me, so it’s reassuring knowing that there’s someone else who doesn’t have full dislocations
@@motionless_horizon Do you have vEDS out of curiosity? I have heart issues too, with hEDS, I feel you, we're all in this together
This is really sad and there are different kinds of EDS as well. Some affect the blood vessels and heart as well. I worked with a patient who wanted to have surgery on their knee due to a dislocation and fracture. However they didn’t want to risk performing the surgery because of the risk of the patient bleeding out. This person had their thumb dislocated at all times, their shoulder was fused, hips/elbows/wrists had multiple dislocations. They had to have crutches to walk with due to the knee fracture, but they couldn’t use them because it caused joints in their upper extremity to dislocate. They did not want to sit in a wheelchair either because they had been on hospice before and felt if they sat, they would begin the process of dying. I was trying to help them rehab in physical therapy. Super sad and really difficult for patients to be active.
So would it be okay if i ask you since you've obviously treated people that have had to deal with this how mild versus extreme EDs cases can be?
@@carenarose6037 I think my experience is a little biased because most people who have it are coming in due to a problem like pain, hyper mobility, or a dislocation. I really don’t see the people who have it and are not bothered by it. The most mild cases patients are dealing with hyper mobility of the joint. Hyper mobility can lead to pain, but it doesn’t always lead to pain. The most extreme case I have seen is described in the comment above. Strength training is really important for patients with EDS so the muscles can provide another layer of support to hyper mobile joints.
@@erikcronrath3858 okay I understand that thank you so much for sharing (: I only asked because for quite some time I've watched videos of people with EDs because I related to alot of what they said but didn't know the actual criteria until recently and know I pass everything I could know without a doctor. I experience alot of joint pain and instability and know some thing don't sit correctly in their joint sometimes but never thought to see if me being hypermobile could in any way cause it or be a symptom of it. Don't want to go and see if i could maybe get tested for EDs or simular things thought if ny issues are way to mild. (I know not connecting it is slightly dumb but I'm young and the pain and everything about me is obviously my normal so yeah)
@@carenarose6037 there are blood work tests you could request and a physical exam screening called the “Beighton score”. EDS is often undiagnosed in really mild cases so the incidence of this disease process is likely underrepresented by current statistics. A rheumatologist is likely the health care professional that will conduct the blood work tests, but that will likely require a referral from your primary care physician.
@@erikcronrath3858 Don't the blood tests only work on the rarer types though? I've had two different doctors look at my beighton score and I pass with a 7 yet neither mentioned or asked any questions about EDs or any other connective tissue disorders they just kinda shrugged it off. Thank you for talking to me btw and offering advice!
I’m 18 and have become pretty severely disabled due to EDS. My heart rate goes to 200bpm when I stand and walk, which makes me pass out, and I had to drop out of school because of the intense pain and fatigue. It caused my intestines and bladder to shut down as well, so I struggle a lot with food and water intake. Yet I always hear “you don’t look disabled” and “you’re too young to be disabled.” Thank you for talking about this
Have you been tested for POTS? My 18 yr old daughter has EDS and POTS. What you describe sounds a lot like what she's experienced. Fortunately we found a cardiologist who specializes in both disorders, and she was prescribed several meds that make it more tolerable.
Just went through my second shoulder stabilization surgery this year due to my eds, thank you for the awareness you are spreading about this disease/disorder because people are so non understanding that disabilities can be invisible
I have the opposite of this; Ankylosing Spondylitis aka the 'invisible disease' it’s autoimmune and causes deterioration in joints and excessive calcium production in the spinal column discs causing the fusion of spinal sections. It is known as “bamboo spine”. Also comes with a myriad of symptoms that have symptoms of their own
It’s certainly not the opposite as I have both lol
😢Read Isaiah 33:24😊
So the fusing of spine means you can't bend your spine well?
I have a very minor case of this thank goodness. But it does make joint injuries more common and explained a lot of things growing up
This is my first time hearing about EDS and I feel sorry for those who are suffering from it. I can't stand people who say you don't look disabled, they have no idea what you're going through. I have osteoarthritis on both knees and I'm also bone to bone. I use a walker to get around, it's very painful. God bless those that are suffering from EDS. I really hope they find a cure, to stop the pain and keep the bones from dislocating.Sending prayers 🙏 ❤️
my mom calls us walking elastics
I have type 3 and cant stop laughing. Thats hilarious
Yep...had two back surgeries, 2 partial menisectomies, numerous partial subluxation of my patellas, retinal tear in my right eye and now will be scheduling knee replacement in the spring (or possibly sooner). My finger, toes, shoulders, ankles hurt from arthritis. I honestly am mentally ready for knee replacement. My joints were never as bad as hers, though...so I'm thankful.
Yaaaaaay for you! 🎉
I have EDS and Marfan Syndrome ! Thank you for sharing!
What does the marfan syndrome affect?
I literally have to be aware of how I'm holding myself together when I stand, walk, run, move anything, pick things up, turn, etc.
If I'm not consciously thinking about how I'm keeping my joints together, I will sprain or dislocate them from the slightest pressure
EDS is not just elasticity, not just joint pain, not subluxation or dislocation. It can affect how baby moves about the mother's womb, can lead to breech births. It can be associated with immunodeficiency. It can cause mich problems with crumbly teeth. It is a genetic disorder - It can be passed down through the generations.
There are plenty illness, diseases, all sorts of body or endocrine malfunctions, immune system, etc., etc. that look just fine to the unknown eye, meantime we suffer in silence. Good thing to show these issues so more people can understand. 😢
OMG bless her heart...
Please do one on Loeys dietz syndrome. I have it and my mother as well. Just wanting a drs opinion on when you get older with this condition
I have EDS, no Dr believed me for years. When I got my dx, I was happy and sad at the same time... I had been resetting my dislocated parts on my own for years.. That pain is no joke.
Keep slaying the game!
one of my closest friends has EDS and its been so hard to get diagnosed with how awful the doctors treat them. just because someone doesnt LOOK disabled doesnt mean theyre fine :(
God bless.
May he be with us all in our struggles.
Thank you for sharing ❤
There's around 13 types and many of them cause increased risk of heart issues, sadly
That’s why my mom signed my brother and I up for heart studies at OHSU when we were little and had heart scans every few years since then. Nothing really notable I have a small valve leak that is pretty normal and not causing any problems.
@@clarahensley3106 I'm glad your mom stayed on top of things! And I'm glad nothing too serious has come up for you guys with your hearts besides the valve leak. Hopefully it stays that way
I don’t understand how people say this isn’t real or people don’t look disabled etc. HER ARM IS OUT OF HER SOCKET THATS NOT WHAT AN ARM IS MEANT TO LOOK LIKE
I also have EDS, and for some reason watching this makes me remember a doctor's appointment I had once: I had been doing a lot of research and had come across EDS as a possible diagnosis. I walked into the appointment with a full list of reasons, sources, and everything for why I thought I had it. The doctor looked at me and said, "You don't have the facial structure." Since then, I've been diagnosed with it, but it's just a funny and pathetic memory. When even the doctors don't believe us... Fun times.
😢
A lot of doctors are incredibly uneducated on EDS and don't know there's 13 types. Most types won't change what your face looks like and the types that do barely change the face.
I'm sorry you had to deal with such an uneducated fool
I live with this and have experienced that too..not to mention the medical gaslighting of ignorant drs who don’t get that this can and does happen (not as a choice)
I have several mental disabilities and EDS but I am extremely bright and good at masking so when I do tell people they don’t believe me
I'm so glad my EDS isn't that bad
Same.
Same, my hip is pretty bad but luckily my shoulder isn't this bad!
@@TheGothicMother kinda same for me my shoulder is a bit meh but my hips and knees let me down alot
Make sure to start physical therapy as soon as possible, even if you don’t feel like it’s necessary!! Having muscle built to protect your joints now will help prevent full dislocations in the future!
@@motionless_horizon yes. Specifically focusing on stability. Just doing general physical therapy can worsen problems. Also, limit stretching.
My cousin passed away the same age as me with eds this its a very tough life they are very strong mentally god bless anyone who has it
Bless her heart ❤️
Poor woman. I am so sorry this is happening.
I'm officially worried. I was diagnosed withhyper mobility in my 20's. "Loosey Goosey" my Ortho called me. Through the years I've had some weird stuff go on w my body like heart murmur (from prolapse), hysterectomy (from prolapse), my shoulders began rolling out of socket (surgeon who fixed the left one said tendon prolapse), Spinal issues requiring a fusion in my c-spine (neurosurgeon said bone spur likely caused by hyper mobility), lordosis and mild scoliosis (again hyper mobility).
Also I was diagnosed w pelvic congestion this May and had over 50 coils put in my pelvis to reroute the pooling blood. Had to get sclerotherapy for the huge veins that had popped out all over my legs.
People have always commented that my skin feels like velvet or Jello and I'm always covered in bruises.
Until just this moment I thought all of these issues were unrelated. Now I'm not so sure and wonder why no doctor has ever mentioned EDS to me.
This is me currently I’m in the Uk and they’ve basically told me they don’t know how bad it will get or what will happen
I was diagnosed 38 years ago and all my life I've read everything I can get my hands on about this disease. From everything I know and everything you just described, I would recommend that you seek out a specialist right away. It sounds like you could have the Vascular type of EDS, which can be very dangerous if undiagnosed. Not too scare you, but two of my family members died from V-EDS. Please take it seriously and don't stop looking into you find a good specialist. There is a genetic test to see if you carry the Vascular EDS gene. Best of luck to you!
@@hayleyhayhayb8129 so sorry about that. Do they have a plan to at least monitor the situation?
@@tly3 Thank you for your recommendation. I'm seeing my primary doctor in February and plan to discuss this with her. I'm nervous. Not just about this subject but also just found out I have moderate spinal stenosis and I'm going to see a neurosurgeon next week. It's just so too much. I'm very overwhelmed😳
Also very sorry to hear about your family members 😢@@tly3
hey i have this! thanks for bringing awareness!
It looks really painful. I hope someone find a remedy for this debilitating illness 😢
Everyone in my family have EDS. My symptoms started in high school. People constantly saying things like.. if you work out and build stronger muscles, your bones will stop dislocating.
I hope they find a cure soon❤
Lol laying here with EDS trying to pop my shoulder in at 1 am since it's hurting and this comes up 😂
This is really entertaining!
The most horrible thing to deal with but because I look fine, I must be fine, right?
I have ehlers danlos, and my god is it a nightmare, especially working at a grocery store
I was always super flexible as a child but later on in life with rough sports I would begin to dislocate sockets easily
Gut, dass du es zeigst.
hEDS too, I had hip surgery last year, and I'm having back surgery this year. It's going to rain and my spine is currently on fire. I'm so tired.
Rain?🌧 Does it only hurt before rain or do you notice it more before rain?
Did surgeries help? They want to do tmj replacement for my eds
This is called 風濕 in Hong Kong Cantonese, may translate as arthritis
That looks so painful! Im so sorry she is going through this!
My brother at 29 , 14 years ago and his son at 19 passed of VEDS less than 2 months ago I can say nothing good about this horrible disease. I took my baby brother and nephew. My brother we didn’t know until he passed and my nephew vicious seizures.. We are done 😩💔
I was finally diagnosed at 37. I had already had 4 shoulder surgeries due to dislocationa and they still dislocate to this day if I sneeze too hard. Controlling the pain is nearly impossible. I also have multiple comorbidities. Thank you for helping us get seen.
My daughter and i both suffer from Marfans Syndrome, this often gets mixed up with EDS.
This was what Mel Thompson passed from. Thank you for spreading awareness about this bc she struggled for years to find out what was wrong & was diagnosed way too late so she dealt with that nonstop which effected her mental health too which is incredibly heartbreaking. She spoke about it once she found out & it was so quickly after, at least it felt that way, that she passed. She was such a lovely person.
What can help strengthen one’s body? And any supplements or natural foods that can help? Hearing of the problems any suggestions to improve health will be so appreciated. Thank you
My bestie has this as ONE of her health problems. She can dislocate a rib by coughing.
We met over 30 years ago due to missing over a month of school due to our health issues. The one good thing to come from the daily hell we endure.
Finally people noticing that look of a disability says so little, in this case it is physical, but lets say invisible mental problems, people are going to expect the same like a normal person because they think you are all fine and dandy like the rest of the world.
I messaged my rheumatologist today...I have sjogren's, and my bicep completely tore last week. Could connective tissue disease cause a torn bicep?
Poor thing, prayers to you 😢
At 30 years old I finally found connective tissue disorders after making a game out of dislocating my shoulder to gross people out since childhood 😅
And all these years I thought my sexy girlfriend was making excuses 😂
EDS = Ehlers-Danlos Syndrome
There are subtypes such as vascular.
Man I have the same issue with that shoulder. I went through a period of having it strapped up because it wouldn’t stay in the socket.
These days it’s my ribs, I have one that’s pretty much permanently out these days.
How long did urine have you keep strapped?
I have this disease. It's horrific! Any one of my joints can either sublux or dislocate at any given time. 😢
It's not a connective tissue disease, it's a collagen disorder. It affects all collagen, not just that found in connective tissue. Hence why digestive and heart problems also occur
There are 13 different types of EDS.
Some have symptoms inside the body, like in the vascular structures, aortic aneurysm risk.
May GOD be with her
My husband has EDS vascular disease. He has very thin skin which causes cuts and bleeding at the slightest bump. It also means his arteries are friable so elective surgeries are not allowed and any emergency surgery could result in bleeding out. It is a very scary disease.
My eldest child has this as well as POTS, a paralytic digestive condition( sorry can't pull the name out right now) but makes eating so difficult cause she/They cannot digest a lot so it either passes through Them untouched or is regurgitated whole. My child is 35 and has gone through sheer hell for years. And yes doctors didn't listen or seem to care and just put it all down to weight and PCOD. Had to have a uterine emblasion(wrong word again but burned away the lining of the uterus to stop constant bleeding and pain that was making Them anemic and sterilized Them.) There is something with Their heart and had a couple brain bleeds. Before any of these other things happened They had to have the gallbladder out due to having dyschonesia and that led to infection and a hernia. It was thanks to that fiasco that the rest of the issues started presenting in ways that let us know there was a lot going on. It still took Them years to get were They are now and unfortunately I don't know any more as They have decided to hate me and cut me out of Their life over differences of opinions on some things and my problem learning how to use different pronouns etc. Doesn't change my love or loyalty.
Also Their fiancee has spondylitis and is going through a lot himself. I wish They would let me back into Their life but more important I want help for Them both.
How does one get an official diagnosis? Who diagnoses this ?
The doctors won't even diagnose EDS much less treat it. I don't know what to do with my pain. They still think it's only one in 5 thousand who have it.
Suffering with this and its terrible getting treatment for the pain is almost impossible. I travel 500 miles every month just to see my doctor.
I have this happen to me. It is beyond painful.
My daughter went through this. She was diagnosed with EDS at age 16 and had 2 Shoulder surgeries before 18.
This is what Violet Sorrengail from Fourth Wing has
I'm dealing with 4 fully torn tendons in my rotator cuff. I believe we share the same pain ! 😢
Hey! I have this! I had to stop training to be a power lifter once i was diagnosed.. :( the one i have still and had so much as a kid is extreme "growing pain" they have me crying, and because of my eds the muscles in my stomach dont register food so i have lots of belly issues 😢 your not alone.
I've been trying to get an official dx for 2 yrs now. If i could find adr that knew what it is that would be great
Usually affects a lot of people later in life who have hypermobility joint laxity syndrome or double jointed
Is there a test for this? Im very fit but have problems with hip and shoulders moving out of place. My PCM has been unable to diagnose an issue
Yes, but in my experience despite referrals unless someone in your family has been diagnosed, they won’t even entertain the idea. Which makes it almost impossible to get a diagnosis even if you do have it. I would still seek a referral out, however. It could just be Kaiser being terrible at caring for chronic illnesses.
The diagnostic criteria for Hypermobile EDS and the difference between Hypermobile Spectrum Disorder are available online. The Ehlers-Danlos Danlos society has a comprehensive website with the types of EDS, the genes that cause the different types that have been discovered, and the diagnostic criteria for Hypermobile type. A patient can review the categories and see if they fit. A mild to moderate mitral valve prolapse is required now for Hypermobile EDS so an echocardiogram is needed for diagnosis. The family history or having another memeber of your family diagnosed can be done using the Hypermobile criteria and instructions for adjusting Hypermobile expectations for someone being diagnosed later in life are listed.
I have fibromyalgia people think I look fine when I really feel like a bus ran over me all night.
My shoulder dislocates in my sleep constantly. It's super fun.
My mother has this it’s where you get bruised easier and your body does stuff like in the video right?
So many still dont accept not all disabilities area visible
Thank you so much for posting this. ❤
Thank you. Had a doctor tell me it doesn't cause pain. Found another doctor
Good for you, never let them tell you your wrong❤
May this disease has a cure.I feel pity for those who have disease,for the pain they are experiencing.
Ooh, she has my sympathy with joint dislocation. My right knee used to dislocate and it was agony.