I was initially diagnosed a bit by accident - I was seeing a hematologist for the first time for something unrelated and the Dr required a very extensive new patient questionnaire. After reviewing it she asked a couple of additional questions and said I believe you have EDS. I was 61.
Thank you to everyone with EDS who do educational videos and the doctors who are educated about it. I'm 48 and suffered my whole life and I recently was diagnosed. Love to all who suffer with it and love to the doctors who help us all. 💕
When I was a small child, my mother took me to numerous physicians & pediatric specialists for my pain, angina, fatigue, breathlessness, injuries, etc., and Mom was finally told to sop wasting her time and money that it was merely growing pains. I wasn't diagnosed until I was 68 and my symptoms are much worse, wearing braces, etc., and am now disabled.
I After doctors have told me for decades I had fibromyalgia or something else, I finally found a doctor who diagnosed me with EDS and after watching this video and others a light went on. I have every symptom described for the hypermobile type. I had never heard of this before. It is good at least I know what is wrong with me and perhaps my husband will now stop calling me a hypochondriac. Thank you for educating the public.
Spreading awareness and educating people on EDS is SO IMPORTANT. I have always been thought of as extremely clumsy and accident prone ever since early childhood. With multiple things wrong with me, I have also been labeled a hypochondriac pretty early on in life. Anxiety symptoms, sleeping disorders, abdominal pains and irregularities, hormonal imbalances and well, hyper mobility of course.. w/subluxations. (The list of symptoms goes on and on though..) Most of my symptoms I would dismiss myself for years and years, like bruising and scarring. Or sleeping a lot. I can sleep for a whole night+day and not feel rested. I would just say "I just like sleeping" or "Oh, I must have bumped into something" about the 20 bruises on my legs and arms that people would comment on. Later on in life more and more things come up and the doctors seem to think it's impossible to have as many things wrong with me as I have so... no one really wants to try treat me anymore. They just say the only thing wrong with me is hypermobility in the joints and some separate things like nausea because of acid reflux. No one ever asks questions or looks at the complete medical history here. We don't have personal GP's here. Every time you go in you are treated by a different doctor. I have looked into EDS for quite some time now and every new bit of information I get the more and more sure I am that it's a form of EDS rather than anything else. The worse it gets, the more vigorously I do research. Chronic muscle /bone pain and pain in my joints has become a harsh reality ever since I went through neuropathia epidemica a couple of years back. It made all my symptoms a lot worse. Some days it feels like I was run over by a bus. Everything hurts, from moving my eyeballs to swallowing. I'm hoping that day by day I will have more information to show doctors here (they really have no idea what EDS is..) and will some day get diagnosed correctly. And I hope that everyone out there going through the same thing, will too. ♥ Good luck!
Other than having one consistent GP who knows only the very superficial basics of EDS and wouldn't believe I had the hypermobile type until I found a geneticist who specializes in diagnosing are diseases two hours' drive away with a one-year waiting list who would officially confirm I definitely _HAD_ it. All the local specialists I saw who all agreed with the first one in saying they 'couldn't rule it out' because I don't have stretchy skin (which isn't necessarily associated with the hypermobile type but more with the classical type!) and neuropathia epidemica, which I've never heard of four years after you first posted this, I completely relate to everything you say here--especially the sleeping loooong hours and _never_ feeling refreshed! The sleep deprivation just keeps getting worse with age! Except when I'm sleeping, my favorite 'activity,' I feel like I'm 500 years old and carrying a rotting corpse around with me just getting out of bed, let alone on the rare occasions (gross, I know) when I can make it through a shower! I hope you've got a diagnosis by now. It's such a relief to stop being treated like a hypochondriac and having treatments forced on me, like physical therapy, neck-strengthening exercises that hurt when my neck muscles are already so tight they give me tension headaches and massage therapists can't get the knots out of and I can hear the vertebrae grinding together, and yoga that actually make people with EDS worse! What always strikes me is how easily doctors will definitely diagnose you with the catch-all Irritable Bowel Syndrome, which I have a whole book on that said it's what they label you with when there's definitely something wrong with your digestion but can't figure out what it is ... yet nobody will go out on a limb to confirm you have hEDS even if you have the ENTIRE list of symptoms because there's no genetic test! How did they ever diagnose EDS before the human genome was mapped just a few years ago??? So frustrating. And it just causes me total contempt for the 99.999999% of the medical community who have such humongous god complexes that they label people like us as hypochondriacs. While I was still waiting for my diagnosis, I actually had the 'chiropractor' who gave me the vertebrae-grinding neck exercises yell at me: 'Stop wasting time self-diagnosing on the Internet and DO THE EXERCISES I GAVE YOU!' 😠
I just read what you wrote and it could have been me writing that! I'm 56 and finally went to a new Dr who knew about EDS. It has been so frustrating going from Dr to Dr and they all treat each issue separately not knowing they are all connected. Hang in there. I am just starting my EDS journey.
@@mooncove I feel like all of us going through a diagnostic journey feel wronged by medical professionals at some point. Not heard and just dismissed. It's awful. I have gotten a HMS diagnosis and IBS diagnosis, but treatments for just these 2 things are not fully working to solve everything going on. I just put school on hold because when I get home from riding 4 busses there and back, sitting and walking my feet and legs feel like they're on fire. When I get home I have to walk my dog and take care of my home too so doing school work is near impossible. I get medical leave so often that I'm behind in my studies. Now we're starting psychiatric care to address hypersensitivity issues, which are getting more pronounced the more pain I'm in and the more sleep deprived I am. The doctor specialist I go to says the diagnosis isn't important so there's no need to try diagnose EDS and HMS is enough to get the same level of care. My issue with that is the fact that the list of diagnoses I get keeps piling up when it could just be this one thing causing every symptom. Maybe one day I'll know for sure, but for now I'm going with HMS/IBS. Thank you so much for writing this lengthy response and sharing your story. I hope you get good treatment and care where you're at and keep getting better at managing your health.
@@JV-xn6xw I'm sorry to hear that you too have been in a situation where you play parrot with doctors that just don't have the time and opportunity to get a full and clear picture of symptoms. What people need to do is what I did and log EVERYTHING either in video of text form. I did it for 3 months with my symptoms and also made a crossover list with HMS/hEDS symptoms and marked what I have with a little x on both lists. Then I made a doctors appointment for 1h so I had enough time to tell my story and took everything I had with me and gave it for them to look over. Then finally after 3 years of trying to get someone to help me I got what I needed - a doctor with 2 working ears and them taking my situation seriously. Glad to hear you finally got a good medical experience. The journey will have more disappointments and high points as well, I'm sure. At least now you have a direction to go to. Best of luck and take care. :)
Thank you! To know even just one more person doesn't think we are all hypochondriacs makes a difference and gives us hope that the general practitioners of the future will know what they are looking at and not diagnose kids with "growing pains" or clumsiness. Thank you for being part of the solution it means a lot that someone without eds would go to all this effort to try and raise awareness. You have done an amazing job and should be very proud of yourself!
I was diagnosed last year with hEDS. I thought thank goodness, now I know what's wrong with me and what I can do about it. But recently I was treated badly by a doctor and he refused to help me. I now have an answer as to why I have cervical dystonia (Dystonia is associated with EDS) but he flat out refused that this was true. I agree with Professor Bloom that some doctors do not know enough but profess that they know more than they do. This is really damaging to patients. Thank you for sharing this and spreading awareness. Xxx
I’ve been labelled a hypochondriac and a rheumatologist has even lied about our consultation, saying in his report that I have depression and anxiety. I don’t have stretchy skin, therefore I can’t have EDS, one doctor said. I have always had extreme hyper mobility and have tired easily since my teens. Now my hip, groin, lower back, knee, shoulder and ankle are in really excruciating pain. My hip is the worst, it is agony all the time and I have no quality of life. I’m lost and don’t know what to do. A rheumatology nurse suggested looking at connective tissue disorders which is what led me here. When I read up on EDS, it was as though someone had switched on a light. But I don’t know how to get the help I need. I often feel so overwhelmed with exhaustion that I am dreaming before my eyes close as I sit on the sofa. I desperately need help but have no idea where to turn.
Look for a second opinion. First of all inform yourself the most you can and remember your reumatologist that stretchy skin is absent in some cases of EDS. The fact your skin don't strech doesn't mean you don't have it...if they don't listen make sure you search for help on another reumatologist or GP practitioner. Look for doctors in the internet near you that have experience with EDS cases and get a geneticist appointment reumatologists are not experts in genetic issues some might know about it but it's not their area of expertise . Good luck dear
I spent my entire life in pain and with illness or injuries. My father was a pediatrician and he labeled me a hypochondriac. My doctors said it was all in my head. I was finally diagnosed at 57. I understand your overwhelm. Start with the worst symptom and ask yourself, "If I could get help for this one problem would my life get a little (or a lot) better?" Take one step only. Pace yourself. Each time you feel a little better you will find more energy to push forward. Sending a virtual hug.
Doctors are not going to be able to help - they don’t know abt Eds - please get yourself to the nearest sports therapist or sports physical therapist - they are the only ones who know how to adjust our joints back to normalcy and make us do the strengthening exercises around those joints to keep them in place.
Found out yesterday, after 4 years... my doctor called me lucky because I found out at 13 and so soon in the journey. YA NOPE FOUR YEARS IS TO LONG! Don't even get me started on the poor souls that never found out or it took NEARLY ALL OF THEIR LIFE! Oml... keep doing what your doing, it really does help.
Madison Riley to know earlier will mean you can be proactive to protect yourself against injury. I found out last year & because I’ve hurt my joints over the years it means degenerative disk disease etc. protect your joints
Darla unfortunately I did quite a bit of damage, but for sure nothing too awful. I was a soccer goalie (so I was hitting the ground a lot) and played volleyball (knees hitting the ground, elbows over extending) and then a year ago I was in a gnarly car crash which messed up my neck. Other than that I do okay, some days are rough though
Danielle Russomanno yes! It’s crazy that it takes so long, luckily my mother is a godsend and after maybe 6 months of complaining on my part she dived completely into fighting for me. It helped a lot that my pediatrician was suspect of something wrong as well.
@Danielle Russomanno Once I found some of this kind of video and knew what to ask about it took me 2 weeks. Before that though I have been trying to get doctors to listen to my concerns for 7 years.
I have EDS and our hospital and immediate care clinics have not a clue what it is. I have Classical EDS. Luckily my actual Neurologist knows because he is the one who has diagnosed me, my eye doctor knows and my OB/ GYN knew about it, she knows that I have PCOS which is also from my research a comorbidity.
This was very nice thing to do as someone with eds I had to learn to to right over again in 3rd grade I was given a thumb brace and told that I needed to write like this now it’s a hard thing in everyday life but I was seen to have it early in life and I’m lucky for that
Great job! I wish they'd spoken more about common co-morbities. Those are just as debilitating and it would show what else people with EDS experience day to day. Saying each day is unpredictable and showing her tired doesn't quite express it. But thank you, any awareness helps.
I got diagnosed with eds type with fibromyalgia. I'm not completely sure about fibro. I also have POTS, cardio nero symphony. Tbi. I just want to be happy n healthy n pain free
I wasn't diagnosed until I was 42. My middle daughter's neurologist put the puzzle together in December of 2012. She was 14 and very ill due to EDS and several comorbidities. Since she was diagnosed, me and my other 3 children have been diagnosed with hEDS. My ex husband says he was diagnosed with Kyphoscoliotic type. We still struggle to get proper treatment despite being within a 4 hour drive of some of the best EDS Doctors in the United States.
I'm 12 and I have Elhers Danlos Syndrome ( E.D.S )Sadly my School doesn't believe us that it's bad :( so I've missed more days of school them I'm suppose to!)So the nurse never believes me and sends me back to school! Once I could barely breath ( I got bad heart burn which comes with EDS ) I was in so much pain and the nurse gave me some water and sent me back to math class! I couldn't take the pain and I started crying alot and two of my friends were in the same class as me. They both ran to me and straight away brought me to the nurse who sent us back and my friends where SO mad!! Instead of going to class they brought me to the councilor who was like WAAAAAAAAT and sent my friend so class with a thank you and she brought me to the nurse to talk to her. The nurse said I told her I had a slight headache!!!! 😠😠 this summer I'm going to New York to get a note thing at the doctor that allows me to go to the nurse without an argument and the nurse can't be a......... Ya know...The nurse is old and sassy so I hope she retires soon hahahhahaha! Btw my friends got in trouble for not asking to leave but they had a good reason :3
You need a 504 plan with your school. A 504 plan ensures you accommodations for your disability. I'm not sure if that is the note you were talking about because it requires a medical note, but you should ask your doctor about setting up a 504 plan with your school so they can't behave in that way. The ADA guarantees you reasonable accommodations for your disability. What the nurse has done is not only horrible, but is a violation of the ADA.
Sorry this happened to you honey. What about your parents why don't they step up for you with the school staff... This is not good all of this negative feedback your are facing and usually is where isolation starts. Please talk to you parents tell them how you feel and ask for help
Hi there 😊 I have just come across your RUclips page. I too am a EDS (hypermobility) sufferer, also with Chronic Pain Syndrome and a few other issues. Have had symptoms for 13 years, been diagnosed for 8 years❤
A geneticist aware of this disease is the person to diagnose. We started with an aware rheumatologist who started treatment while we were waiting for the gen appt. Join EDS support groups in your area and ask for recommendations for these specialists and others you will need. Pediatric specialists who are aware are especially hard to find, in my experience. Good luck
Thank you for this great Video. Does someone maybe knows a doctor in Switzerland who can help me? I am not diagnosed as EDS patient but I fullfill almost all of the new criteria. I had always problems since I was a kid and at the moment its getting worst and worst. I have every day pain. I`ve already been to several doctors but noone takes me serious. Usually they give me pain killer what actually not works :( Please if someone have an idea where I should go with it let me know.
I’m in so much pain rn and I’ve had a few friends tell me my symptoms match so I’m researching and this looks just like me! I’m going to keep researching and try all the stuff like making sure I’m doing lots of exercise and eating and sleeping well but I think it’s EDS. I’m currently doing blood tests and stuff with my doctor so in a few weeks I’m going to bring it up and see if that’s what’s up. Tysm for these videos they’re really useful!
I think it is very important to educate drs. My child is 21 now and has mcEDS she has been very ill all her life with serious complications. This video does not really reflect how she is. She has been doing physio all her life and continues to deteriorate and needs a wheelchair to have some independence. She can not stand unaided. I feel this video doesn’t really reflect her or our family and some of the other families I know who have children with rare EDS types who deteriorate even with hydrotherapy, physio, a whole team of Drs looking after them. It’s important for Drs to understand that EDS looks very different for each person. Not to make assumptions. Our consultant paediatrician thought my daughter had a muscular dystrophy due to thinking that EDS was something very different, hypermobility and people who could lead a normal active life. That does not reflect my daughter or many sufferers like her who are severely disabled despite all the supportive treatment.
jenny jackson I appreciate what you are saying. I am wondering if the very sick EDS folks share various central nervous structural issues - like Chiari, like great instability at C1/C2, possible Tethered spinal cord, instability of sacrum/ pelvis. The instability of the sacrum causes huge issues - and affects the upper neck. Sometimes Chiari is hard to diagnose. Takes an expert neurosurgeon. I have been diagnosed as Chiari O - but have the same problems as regular Chiari people. Big hugs. Such a journey
Is there a recommended diet for this? Does it link to over use of inside lighting or blue light? Does it link to vitamin D status or Any of the B vitamin status?
Vitamin C supplements can help promote collagen production, but EDS is a mutation of the genes that produce collagen. It hasn't been attributed to anything other than genetic inheritance from parents.
I have a question that you might find dumb but anyways here's the best place I can ask : I have highly suspected hEDS and some things in my body seem to fall under its umbrella but one thing is weird : when I put all my bodyweight on one leg, or one hip (besides the pain part) my hip pops and sort of gets out (you can hear, see and feel it) but in 2 times like 'pop 'pop'. Is it a hip subluxation ? (cause I have a few subluxations and most of them do hurt except for the shoulders) but this one doesn't really hurt. Is it not subluxed but just hypermobile ? Should I avoid doing it ? Is it even EDS related ? Thank you for your time and attention
Quick question.. I am currently researching this as a diagnosis and have most of the criteria but one of the things I deal with is rotator cuff tears. Having my second repair surgery in a couple days. Had anyone else experienced tears like this with no injury and it was linked to EDS? Thanks a ton!!
Are there any sort of scholarships in place for students with EDS? I just graduated university in a great school in new york city and becuase of EDS it took my longer to finish and i have over 100,000 in student loans and just graduated a few weeks ago. Are there any measures in place?
I was initially diagnosed a bit by accident - I was seeing a hematologist for the first time for something unrelated and the Dr required a very extensive new patient questionnaire. After reviewing it she asked a couple of additional questions and said I believe you have EDS. I was 61.
Thank you to everyone with EDS who do educational videos and the doctors who are educated about it. I'm 48 and suffered my whole life and I recently was diagnosed. Love to all who suffer with it and love to the doctors who help us all. 💕
I’m 48 and that’s how old I had to turn just to find out I have it! Evidently I had it all my life!
When I was a small child, my mother took me to numerous physicians & pediatric specialists for my pain, angina, fatigue, breathlessness, injuries, etc., and Mom was finally told to sop wasting her time and money that it was merely growing pains. I wasn't diagnosed until I was 68 and my symptoms are much worse, wearing braces, etc., and am now disabled.
46 undiagnosed, my story is similar. I hear you and your not alone 💗
I
After doctors have told me for decades I had fibromyalgia or something else, I finally found a doctor who diagnosed me with EDS and after watching this video and others a light went on. I have every symptom described for the hypermobile type. I had never heard of this before. It is good at least I know what is wrong with me and perhaps my husband will now stop calling me a hypochondriac. Thank you for educating the public.
Spreading awareness and educating people on EDS is SO IMPORTANT.
I have always been thought of as extremely clumsy and accident prone ever since early childhood. With multiple things wrong with me, I have also been labeled a hypochondriac pretty early on in life.
Anxiety symptoms, sleeping disorders, abdominal pains and irregularities, hormonal imbalances and well, hyper mobility of course.. w/subluxations. (The list of symptoms goes on and on though..)
Most of my symptoms I would dismiss myself for years and years, like bruising and scarring. Or sleeping a lot. I can sleep for a whole night+day and not feel rested. I would just say "I just like sleeping" or "Oh, I must have bumped into something" about the 20 bruises on my legs and arms that people would comment on.
Later on in life more and more things come up and the doctors seem to think it's impossible to have as many things wrong with me as I have so... no one really wants to try treat me anymore. They just say the only thing wrong with me is hypermobility in the joints and some separate things like nausea because of acid reflux. No one ever asks questions or looks at the complete medical history here. We don't have personal GP's here. Every time you go in you are treated by a different doctor.
I have looked into EDS for quite some time now and every new bit of information I get the more and more sure I am that it's a form of EDS rather than anything else. The worse it gets, the more vigorously I do research. Chronic muscle /bone pain and pain in my joints has become a harsh reality ever since I went through neuropathia epidemica a couple of years back. It made all my symptoms a lot worse. Some days it feels like I was run over by a bus. Everything hurts, from moving my eyeballs to swallowing. I'm hoping that day by day I will have more information to show doctors here (they really have no idea what EDS is..) and will some day get diagnosed correctly.
And I hope that everyone out there going through the same thing, will too. ♥ Good luck!
Vex i have EDS and that sound like you have some of it
Other than having one consistent GP who knows only the very superficial basics of EDS and wouldn't believe I had the hypermobile type until I found a geneticist who specializes in diagnosing are diseases two hours' drive away with a one-year waiting list who would officially confirm I definitely _HAD_ it. All the local specialists I saw who all agreed with the first one in saying they 'couldn't rule it out' because I don't have stretchy skin (which isn't necessarily associated with the hypermobile type but more with the classical type!) and neuropathia epidemica, which I've never heard of four years after you first posted this, I completely relate to everything you say here--especially the sleeping loooong hours and _never_ feeling refreshed! The sleep deprivation just keeps getting worse with age! Except when I'm sleeping, my favorite 'activity,' I feel like I'm 500 years old and carrying a rotting corpse around with me just getting out of bed, let alone on the rare occasions (gross, I know) when I can make it through a shower!
I hope you've got a diagnosis by now. It's such a relief to stop being treated like a hypochondriac and having treatments forced on me, like physical therapy, neck-strengthening exercises that hurt when my neck muscles are already so tight they give me tension headaches and massage therapists can't get the knots out of and I can hear the vertebrae grinding together, and yoga that actually make people with EDS worse!
What always strikes me is how easily doctors will definitely diagnose you with the catch-all Irritable Bowel Syndrome, which I have a whole book on that said it's what they label you with when there's definitely something wrong with your digestion but can't figure out what it is ... yet nobody will go out on a limb to confirm you have hEDS even if you have the ENTIRE list of symptoms because there's no genetic test! How did they ever diagnose EDS before the human genome was mapped just a few years ago??? So frustrating. And it just causes me total contempt for the 99.999999% of the medical community who have such humongous god complexes that they label people like us as hypochondriacs. While I was still waiting for my diagnosis, I actually had the 'chiropractor' who gave me the vertebrae-grinding neck exercises yell at me: 'Stop wasting time self-diagnosing on the Internet and DO THE EXERCISES I GAVE YOU!' 😠
I just read what you wrote and it could have been me writing that! I'm 56 and finally went to a new Dr who knew about EDS. It has been so frustrating going from Dr to Dr and they all treat each issue separately not knowing they are all connected. Hang in there. I am just starting my EDS journey.
@@mooncove I feel like all of us going through a diagnostic journey feel wronged by medical professionals at some point. Not heard and just dismissed. It's awful. I have gotten a HMS diagnosis and IBS diagnosis, but treatments for just these 2 things are not fully working to solve everything going on. I just put school on hold because when I get home from riding 4 busses there and back, sitting and walking my feet and legs feel like they're on fire. When I get home I have to walk my dog and take care of my home too so doing school work is near impossible. I get medical leave so often that I'm behind in my studies. Now we're starting psychiatric care to address hypersensitivity issues, which are getting more pronounced the more pain I'm in and the more sleep deprived I am. The doctor specialist I go to says the diagnosis isn't important so there's no need to try diagnose EDS and HMS is enough to get the same level of care. My issue with that is the fact that the list of diagnoses I get keeps piling up when it could just be this one thing causing every symptom. Maybe one day I'll know for sure, but for now I'm going with HMS/IBS. Thank you so much for writing this lengthy response and sharing your story. I hope you get good treatment and care where you're at and keep getting better at managing your health.
@@JV-xn6xw I'm sorry to hear that you too have been in a situation where you play parrot with doctors that just don't have the time and opportunity to get a full and clear picture of symptoms. What people need to do is what I did and log EVERYTHING either in video of text form. I did it for 3 months with my symptoms and also made a crossover list with HMS/hEDS symptoms and marked what I have with a little x on both lists. Then I made a doctors appointment for 1h so I had enough time to tell my story and took everything I had with me and gave it for them to look over. Then finally after 3 years of trying to get someone to help me I got what I needed - a doctor with 2 working ears and them taking my situation seriously. Glad to hear you finally got a good medical experience. The journey will have more disappointments and high points as well, I'm sure. At least now you have a direction to go to. Best of luck and take care. :)
Thank you! To know even just one more person doesn't think we are all hypochondriacs makes a difference and gives us hope that the general practitioners of the future will know what they are looking at and not diagnose kids with "growing pains" or clumsiness. Thank you for being part of the solution it means a lot that someone without eds would go to all this effort to try and raise awareness. You have done an amazing job and should be very proud of yourself!
Positive thinking and a gratitude attitude keeps me going. Normal people will not understand.
I was diagnosed last year with hEDS. I thought thank goodness, now I know what's wrong with me and what I can do about it. But recently I was treated badly by a doctor and he refused to help me. I now have an answer as to why I have cervical dystonia (Dystonia is associated with EDS) but he flat out refused that this was true. I agree with Professor Bloom that some doctors do not know enough but profess that they know more than they do. This is really damaging to patients. Thank you for sharing this and spreading awareness. Xxx
I’ve been labelled a hypochondriac and a rheumatologist has even lied about our consultation, saying in his report that I have depression and anxiety. I don’t have stretchy skin, therefore I can’t have EDS, one doctor said. I have always had extreme hyper mobility and have tired easily since my teens. Now my hip, groin, lower back, knee, shoulder and ankle are in really excruciating pain. My hip is the worst, it is agony all the time and I have no quality of life. I’m lost and don’t know what to do. A rheumatology nurse suggested looking at connective tissue disorders which is what led me here. When I read up on EDS, it was as though someone had switched on a light. But I don’t know how to get the help I need. I often feel so overwhelmed with exhaustion that I am dreaming before my eyes close as I sit on the sofa. I desperately need help but have no idea where to turn.
Look for a second opinion. First of all inform yourself the most you can and remember your reumatologist that stretchy skin is absent in some cases of EDS. The fact your skin don't strech doesn't mean you don't have it...if they don't listen make sure you search for help on another reumatologist or GP practitioner. Look for doctors in the internet near you that have experience with EDS cases and get a geneticist appointment reumatologists are not experts in genetic issues some might know about it but it's not their area of expertise . Good luck dear
I spent my entire life in pain and with illness or injuries. My father was a pediatrician and he labeled me a hypochondriac. My doctors said it was all in my head. I was finally diagnosed at 57. I understand your overwhelm. Start with the worst symptom and ask yourself, "If I could get help for this one problem would my life get a little (or a lot) better?" Take one step only. Pace yourself. Each time you feel a little better you will find more energy to push forward. Sending a virtual hug.
I totally relate- my hip is the worst too
Doctors are not going to be able to help - they don’t know abt Eds - please get yourself to the nearest sports therapist or sports physical therapist - they are the only ones who know how to adjust our joints back to normalcy and make us do the strengthening exercises around those joints to keep them in place.
The pain exhausts me and I think I should push through, I try to keep up with others.
No way. I cannot.
Found out yesterday, after 4 years... my doctor called me lucky because I found out at 13 and so soon in the journey. YA NOPE FOUR YEARS IS TO LONG! Don't even get me started on the poor souls that never found out or it took NEARLY ALL OF THEIR LIFE! Oml... keep doing what your doing, it really does help.
Madison Riley to know earlier will mean you can be proactive to protect yourself against injury. I found out last year & because I’ve hurt my joints over the years it means degenerative disk disease etc. protect your joints
Where it’s upsetting that it took you four years to find out, it made me smile. It took me 33 years, and that’s a huge improvement. Hope you’re well.
Darla unfortunately I did quite a bit of damage, but for sure nothing too awful. I was a soccer goalie (so I was hitting the ground a lot) and played volleyball (knees hitting the ground, elbows over extending) and then a year ago I was in a gnarly car crash which messed up my neck. Other than that I do okay, some days are rough though
Danielle Russomanno yes! It’s crazy that it takes so long, luckily my mother is a godsend and after maybe 6 months of complaining on my part she dived completely into fighting for me. It helped a lot that my pediatrician was suspect of something wrong as well.
@Danielle Russomanno Once I found some of this kind of video and knew what to ask about it took me 2 weeks. Before that though I have been trying to get doctors to listen to my concerns for 7 years.
I have EDS and our hospital and immediate care clinics have not a clue what it is. I have Classical EDS. Luckily my actual Neurologist knows because he is the one who has diagnosed me, my eye doctor knows and my OB/ GYN knew about it, she knows that I have PCOS which is also from my research a comorbidity.
Just got diagnosed with this this year and I'm 31 smh... trying to learn all I can now to take care of myself. Thank you so much for making this!
I just got told I have this after years of stomach issues hypermobility pain and other issues. Thank you for telling me what me doctors didn't know.
This was very nice thing to do as someone with eds I had to learn to to right over again in 3rd grade I was given a thumb brace and told that I needed to write like this now it’s a hard thing in everyday life but I was seen to have it early in life and I’m lucky for that
Great job! I wish they'd spoken more about common co-morbities. Those are just as debilitating and it would show what else people with EDS experience day to day. Saying each day is unpredictable and showing her tired doesn't quite express it. But thank you, any awareness helps.
Agreed, great video but as someone looking into diagnosis it'd be super helpful to hear a broad spectrum of examples in terms of co-morbidities.
Diagnosed with #EDS May 25, 2015. I want a walker like that in USA
Thankyou
Helps when a doctor is talking about this
Thank you for continuing to post information.
I got diagnosed with eds type with fibromyalgia. I'm not completely sure about fibro. I also have POTS, cardio nero symphony. Tbi. I just want to be happy n healthy n pain free
Great video. Just sent this to my attorney as evidence for a malpractice suit. The attorneys are so sympathetic. Unlike this particular doctor.
I wasn't diagnosed until I was 42. My middle daughter's neurologist put the puzzle together in December of 2012. She was 14 and very ill due to EDS and several comorbidities. Since she was diagnosed, me and my other 3 children have been diagnosed with hEDS. My ex husband says he was diagnosed with Kyphoscoliotic type. We still struggle to get proper treatment despite being within a 4 hour drive of some of the best EDS Doctors in the United States.
I'm 12 and I have Elhers Danlos Syndrome ( E.D.S )Sadly my School doesn't believe us that it's bad :( so I've missed more days of school them I'm suppose to!)So the nurse never believes me and sends me back to school! Once I could barely breath ( I got bad heart burn which comes with EDS ) I was in so much pain and the nurse gave me some water and sent me back to math class! I couldn't take the pain and I started crying alot and two of my friends were in the same class as me. They both ran to me and straight away brought me to the nurse who sent us back and my friends where SO mad!! Instead of going to class they brought me to the councilor who was like WAAAAAAAAT and sent my friend so class with a thank you and she brought me to the nurse to talk to her. The nurse said I told her I had a slight headache!!!! 😠😠 this summer I'm going to New York to get a note thing at the doctor that allows me to go to the nurse without an argument and the nurse can't be a......... Ya know...The nurse is old and sassy so I hope she retires soon hahahhahaha!
Btw my friends got in trouble for not asking to leave but they had a good reason :3
You need a 504 plan with your school. A 504 plan ensures you accommodations for your disability. I'm not sure if that is the note you were talking about because it requires a medical note, but you should ask your doctor about setting up a 504 plan with your school so they can't behave in that way. The ADA guarantees you reasonable accommodations for your disability. What the nurse has done is not only horrible, but is a violation of the ADA.
i have the exact same problem, sis.
i have EDS
I don’t have any diagnosis of anything yet, but I get you! Keep fighting and spread awerness ;)
Sorry this happened to you honey. What about your parents why don't they step up for you with the school staff... This is not good all of this negative feedback your are facing and usually is where isolation starts. Please talk to you parents tell them how you feel and ask for help
Hi there 😊 I have just come across your RUclips page. I too am a EDS (hypermobility) sufferer, also with Chronic Pain Syndrome and a few other issues. Have had symptoms for 13 years, been diagnosed for 8 years❤
thank you! there is hope.
Thank you. I believe my 9 y.o. son has this. Not sure where to start as far as the medical community.
A geneticist aware of this disease is the person to diagnose. We started with an aware rheumatologist who started treatment while we were waiting for the gen appt. Join EDS support groups in your area and ask for recommendations for these specialists and others you will need. Pediatric specialists who are aware are especially hard to find, in my experience. Good luck
The EDS website has a list of genetic specialists familiar with EDS by country and state. You can try finding one close to you.
Thank you for this great Video. Does someone maybe knows a doctor in Switzerland who can help me? I am not diagnosed as EDS patient but I fullfill almost all of the new criteria. I had always problems since I was a kid and at the moment its getting worst and worst. I have every day pain. I`ve already been to several doctors but noone takes me serious. Usually they give me pain killer what actually not works :( Please if someone have an idea where I should go with it let me know.
I love that poem 💕
Yes, we do need more awareness about this - Thank You
I’m in so much pain rn and I’ve had a few friends tell me my symptoms match so I’m researching and this looks just like me! I’m going to keep researching and try all the stuff like making sure I’m doing lots of exercise and eating and sleeping well but I think it’s EDS. I’m currently doing blood tests and stuff with my doctor so in a few weeks I’m going to bring it up and see if that’s what’s up. Tysm for these videos they’re really useful!
We have a helpline team who are always available and happy to answer any questions you might have: www.ehlers-danlos.com/eds-helpline/
I have EDS, vascular type. This is cool to know as well! :)
Same here
Brilliant video. 👏
to be honest , I have EDS (no wonder I cry all the time)
I think it is very important to educate drs. My child is 21 now and has mcEDS she has been very ill all her life with serious complications. This video does not really reflect how she is. She has been doing physio all her life and continues to deteriorate and needs a wheelchair to have some independence. She can not stand unaided. I feel this video doesn’t really reflect her or our family and some of the other families I know who have children with rare EDS types who deteriorate even with hydrotherapy, physio, a whole team of Drs looking after them. It’s important for Drs to understand that EDS looks very different for each person. Not to make assumptions. Our consultant paediatrician thought my daughter had a muscular dystrophy due to thinking that EDS was something very different, hypermobility and people who could lead a normal active life. That does not reflect my daughter or many sufferers like her who are severely disabled despite all the supportive treatment.
jenny jackson I appreciate what you are saying. I am wondering if the very sick EDS folks share various central nervous structural issues - like Chiari, like great instability at C1/C2, possible Tethered spinal cord, instability of sacrum/ pelvis. The instability of the sacrum causes huge issues - and affects the upper neck. Sometimes Chiari is hard to diagnose. Takes an expert neurosurgeon. I have been diagnosed as Chiari O - but have the same problems as regular Chiari people. Big hugs. Such a journey
Searched for 8 yrs.. Nobody believed my pain..
Is there a recommended diet for this? Does it link to over use of inside lighting or blue light? Does it link to vitamin D status or Any of the B vitamin status?
Vitamin C supplements can help promote collagen production, but EDS is a mutation of the genes that produce collagen. It hasn't been attributed to anything other than genetic inheritance from parents.
I have severe eds.i have bits and pieces of all 13 types. I to use a walker to get around .I live a very painful life.
I have a question that you might find dumb but anyways here's the best place I can ask : I have highly suspected hEDS and some things in my body seem to fall under its umbrella but one thing is weird : when I put all my bodyweight on one leg, or one hip (besides the pain part) my hip pops and sort of gets out (you can hear, see and feel it) but in 2 times like 'pop 'pop'. Is it a hip subluxation ? (cause I have a few subluxations and most of them do hurt except for the shoulders) but this one doesn't really hurt. Is it not subluxed but just hypermobile ? Should I avoid doing it ? Is it even EDS related ? Thank you for your time and attention
Hi
The same thing happens for me. Lemme khow I you've found an answer
Take care!
@@Zahra-ky6rb have you tried a hip brace or body braid?
Quick question.. I am currently researching this as a diagnosis and have most of the criteria but one of the things I deal with is rotator cuff tears. Having my second repair surgery in a couple days. Had anyone else experienced tears like this with no injury and it was linked to EDS? Thanks a ton!!
Are there any sort of scholarships in place for students with EDS? I just graduated university in a great school in new york city and becuase of EDS it took my longer to finish and i have over 100,000 in student loans and just graduated a few weeks ago. Are there any measures in place?
انا لدي ابنة لديها المرض من الدرجة الرابعة
عيون كبيرة ولون بشرة شاحب واوعية دموية رقيقة نحتاج للدعم النفسي والمعنوي
The translation please🙏🏻🙏🏻🙏🏻
That walker is cool
❤❤❤
9:30 is that an EdS joke? Stay flexible.. Lol
Test me for it!
Kristyne.Byrns@yahoo.com
They are ignoring it and I am advocating my daughter also has it and shes extremely flexible like I used to be.
I want to know the maker of that walker! PLEASE!
Or having fibromyalgia
Yes to the bare feet!!