I am 42 years old and I work in the medical field.... it wasn't until a patient of mine came in and began discussing her EDS symptoms that I figured out that I, too, suffered from this! I literally cried reading the literature online regarding this disorder, because it finally shed light on WHY I have had all these (seemingly unrelated) weird things wrong with me all my life. I cannot believe that not one single doctor in five generations (we all have the same symptoms) has ever correctly diagnosed this. I am so happy to know that I am not just a hyper-flexible hypochondriac that has issues with passing out, lol. (=
Annalisa James hi! I have this too as does my mums side of the family. The passing out part may be from a condition called Postural orthostatic techacardia syndrome. I suggest you google it as it is a common thing to have if you have EDS. Hope this helps
Hey, I have eds, and I'm 12, I don't really understand what the doctors explain or on the internet so thanks for this! It's nice to finally understand your own disorder 😂👌🏻
+Abby Webb Thanks for your feedback! In some days I will upload some more videos. If you have any idea or proposal for next videos, tell me and I will do it!
My dad passed away from this when I was a kid, now there’s a huge chance I may have it. I won’t know until a year later because of how expensive the tests are. I’ve never been sad about maybe having a chronic illness and passing away like my father but every time I think about it, I want to cry. I’m getting ready to go to college and I’m hoping I won’t feel any discomfort mentally and emotionally. I wish people would take notice on rare genetic illnesses and fund their research.
I'm sorry to hear about your dad :( that is devastating. I realise that your comment is 3 years old now and a lot might have changed, but in case you're not aware, you don't need expensive tests to get diagnosed with Ehlers Danlos Syndrome. Ehlers Danlos Syndrome is usually diagnosed clinically, often by a rheumatologist. The have a checklist of signs and symptoms that they use for the diagnosis. Other tests can be done to determine the sub-type of EDS, but to start with you could just get a referral to a rheumatologist who specialises in connective tissues disorders. They'll tell you if you have it or not. Also, genetic testing is becoming increasingly more cost-effective with companies like Invitae offering an Ehlers Danlos Syndrome panel for around $250 (though this does not rule out EDS as some sub-types don't have identified genetic markers yet). Check their website if you'd like to learn more about that. I wish you all the best!
@@ash_m_ Hi Ashlee, thank you for the informative and kind reply. I found out I have vascular EDS the same as my dad and so far I have had lung complications of it. Nevertheless , I am still going strong and hope you are living a fruitful life as well! Warm wishes to you and your loved ones this holiday season
@@danielalandaverde Oh I'm sorry to hear that, but at least now you know and can manage it all as well possible. I hope you have a supportive team helping you, and I hope you have a lovely Christmas 🎄
a friend said that eating a lot of salt helps her with her EDS. make sure you don't have high bloodpressure. she's using pink salt which has lots of other minerals and things in it too. also you want to be on an exercise regimen because it helps keep the ligaments stronger.
ik this is from 4 years ago but your friend could possibly have POTS as it's a common thing for EDS patients to also have (my mom, sister and I all have both) and eating salt helps a lot with POTS
+Lourdes Carnicero Jurado Thanks for your feedback! I also have EDS, and I'm trying to raise awareness through these videos (I will upload more in some days). Hope you are doing well! :)
Such a great succinct video. My daughter was just diagnosed with POTS and no one ever mentioned that it might be a symptom of something else. Now we are seeing there is a reason for her lifelong myriad of issues.
What annoys me is how the medical field, especially in my experience in the UK brush off EDS as a mild condition. I am in agony everyday and it's just getting worse, my joints are getting worse and athristis is already setting in and I'm only 27. 😭
😭 I have it I nearly had a heart attack I fainted I couldn't breathe I got rushed to the hospital I can't walk my feet have a disorder and I'm only nine
When i was a kid i had eds disease ,but gradually it was disappeared .now i am 24years and suffering from polyarthritis symptoms and on medication for that,its not exactly diagnosed what it is, is there any chance for not polyarthritis and be eds disease .please answer me😐
Do you mind if I share this video as a link on my Instagram? It's an easy and quick way for when people at school can click if they want to learn about why I have to wear all my braces and splints to keep my body from falling into pieces. You did an amazing job with this video please keep up the great work
I have EDS and so does my mom and brother, it affects mainly my wrists and kneees. I have to wear a brace on my wrists a lot so I dont hyper extend them and tear any tissue
hello everyone i have Hypermobility Ehlers-Danlos syndrome and i’m polling other people with eds on whether they think we should change The NPRS to 1-15 for patient of eds please tell me what you think
hey i have a question what type of eds do you have and the symptoms i have eds type 4 anf im 17 and want to at least know someone like me and thanks for puting up this video its the best one i seen .
I have eds I found out when I was six now in 11 I have had MRI that's like a cat scan I am flexible I get 3 hour nose bleeds headaches I can't do pe eds is bad but I'm glad I don't have vascular
Actually there are10 subtypes and geneticists are learning that MBA went actually cross over so type 3 may also experience some symptoms from type 4, for example...
I am sorry :(... I do understand... Have you talked to your Dr. about getting on a good Pain Care plan? EDS is an Intractable Pain Disease and well know to be extremely severe in pain that Needs to subdued for the health of the patient.
Are you going to update this video now that the types, classifications and diagnostics are different and add the new HSD? Not to mention, the ways EDS patients experience EDS varies widely by individual. This video kind of presents EDS as rather monolithic, and the "symptoms" as if everyone has them. They don't. Those look mostly like hEDS complications but not every hEDS patient has them and they can range from mild to severe. Don't really get how that is educational. But it's outdated now. Any viewers should visit the Ehlers Danlos Society site for all the up to date info since this is all loosely based on 20 year old info and read all the updated info recently published or they will be misinformed.
Eden Everly Eden Everly I will try to update/upload a new video, I now it's out of date. This video was intended to be a brief introduction to EDS. I know that this syndrome is very heterogenous, and it would be impssible to do a short and agreeable video including all the information. RUclips is not the right place to find reliable and exhaustive medical information, for that you have to go to Pubmed or something similar. Even now with the new nosology, many patients don't fit in any category nor have all the symptoms. I'm Med student, and I could do a video explaining the whole new classification and all the diagnoatic criteria but this wasn't/isn't my aim. This is only a short overview which may help to get an idea about what EDS is. I myself have a very rare type of EDS, and I don't match many of the symptoms but not because of that most of the information I find (which is almost exclusively about hEDS) is misleading. All diseases present themselves as very heterogenous, even the flu. I will take into account your critique, thank you.
life expectancy varies based on the version of EDS that you have and yes it can be very painful. my mom, sister and I all have it and we're constantly dealing with our joints popping out of place and our ribs moving (when I'm lying down on my side, a majority of the time I can feel my ribs moving around and if I press down on them, they'll move and sometimes my ribs will move around inside my body and the right part of my ribs will move closer to the center of my stomach and it causes excruciating pain). EDS also causes early arthritis so my mom has arthritis in her wrists and hands and I have it in my feet and my bones in my feet are slowly crumbling so I have to get braces to wear for the rest of my life. I also have a really high arch in my feet that was so high that all of my weight was put onto the balls of my feet and it was incredibly painful so I had to get surgeries on my feet from 2018-2019 and will likely have to get more in the future
My daughter has been turned away by doctors because she is too complex. She has hEDS, epilepsy and adrenal insufficiency. She was just diagnosed with hEDS last week and is being genetically tested. She’s 37 and we have been battling this her whole life. Misdiagnosed with autism, adhd, fibromyalgia and been told it’s all in her head. Her biggest problem is overextending during seizures causing major problems with her ligaments, muscles, tendons and her teeth. But at least we finally have a diagnosis not based on her being nuts.
I am 42 years old and I work in the medical field.... it wasn't until a patient of mine came in and began discussing her EDS symptoms that I figured out that I, too, suffered from this! I literally cried reading the literature online regarding this disorder, because it finally shed light on WHY I have had all these (seemingly unrelated) weird things wrong with me all my life. I cannot believe that not one single doctor in five generations (we all have the same symptoms) has ever correctly diagnosed this. I am so happy to know that I am not just a hyper-flexible hypochondriac that has issues with passing out, lol. (=
Annalisa James hi! I have this too as does my mums side of the family. The passing out part may be from a condition called Postural orthostatic techacardia syndrome. I suggest you google it as it is a common thing to have if you have EDS. Hope this helps
Hey, I have eds, and I'm 12, I don't really understand what the doctors explain or on the internet so thanks for this! It's nice to finally understand your own disorder 😂👌🏻
+Abby Webb Thanks for your feedback! In some days I will upload some more videos. If you have any idea or proposal for next videos, tell me and I will do it!
Abby Webb me too!!
Hey me too! I'm 12 as well, but I understood fully. Its the people around me that don't really get it.
+Tini Octopus ikr. I'm 12 too and I have to keep explaining to my friends what it is
I also have EDS
Great job! I am 63 and have classical type EDS. It is good to see the information finally getting out there.
My dad passed away from this when I was a kid, now there’s a huge chance I may have it. I won’t know until a year later because of how expensive the tests are. I’ve never been sad about maybe having a chronic illness and passing away like my father but every time I think about it, I want to cry. I’m getting ready to go to college and I’m hoping I won’t feel any discomfort mentally and emotionally. I wish people would take notice on rare genetic illnesses and fund their research.
I'm sorry to hear about your dad :( that is devastating. I realise that your comment is 3 years old now and a lot might have changed, but in case you're not aware, you don't need expensive tests to get diagnosed with Ehlers Danlos Syndrome.
Ehlers Danlos Syndrome is usually diagnosed clinically, often by a rheumatologist. The have a checklist of signs and symptoms that they use for the diagnosis. Other tests can be done to determine the sub-type of EDS, but to start with you could just get a referral to a rheumatologist who specialises in connective tissues disorders. They'll tell you if you have it or not.
Also, genetic testing is becoming increasingly more cost-effective with companies like Invitae offering an Ehlers Danlos Syndrome panel for around $250 (though this does not rule out EDS as some sub-types don't have identified genetic markers yet). Check their website if you'd like to learn more about that.
I wish you all the best!
@@ash_m_ Hi Ashlee, thank you for the informative and kind reply. I found out I have vascular EDS the same as my dad and so far I have had lung complications of it. Nevertheless , I am still going strong and hope you are living a fruitful life as well! Warm wishes to you and your loved ones this holiday season
@@danielalandaverde Oh I'm sorry to hear that, but at least now you know and can manage it all as well possible. I hope you have a supportive team helping you, and I hope you have a lovely Christmas 🎄
a friend said that eating a lot of salt helps her with her EDS. make sure you don't have high bloodpressure. she's using pink salt which has lots of other minerals and things in it too. also you want to be on an exercise regimen because it helps keep the ligaments stronger.
ik this is from 4 years ago but your friend could possibly have POTS as it's a common thing for EDS patients to also have (my mom, sister and I all have both) and eating salt helps a lot with POTS
Your video is great! Hope you will be posting up more!
I have this syndrome and I'm in love with this video😊 Thanks you.
+Lourdes Carnicero Jurado Thanks for your feedback! I also have EDS, and I'm trying to raise awareness through these videos (I will upload more in some days). Hope you are doing well! :)
Such a great succinct video. My daughter was just diagnosed with POTS and no one ever mentioned that it might be a symptom of something else. Now we are seeing there is a reason for her lifelong myriad of issues.
Pots could also be Dysautonomia
This was a really great video, I hope you can post more like these about other disorders or syndromes
What annoys me is how the medical field, especially in my experience in the UK brush off EDS as a mild condition. I am in agony everyday and it's just getting worse, my joints are getting worse and athristis is already setting in and I'm only 27. 😭
Today I learned in med school about this illness. This video makes it much clearer.
ChocolateLover I have EDS;(
😭 I have it I nearly had a heart attack I fainted I couldn't breathe I got rushed to the hospital I can't walk my feet have a disorder and I'm only nine
Great videos and put more educational videos like this please
When i was a kid i had eds disease ,but gradually it was disappeared .now i am 24years and suffering from polyarthritis symptoms and on medication for that,its not exactly diagnosed what it is, is there any chance for not polyarthritis and be eds disease .please answer me😐
Does Eds always include pain symptoms ? Please help 🙏
Do you mind if I share this video as a link on my Instagram? It's an easy and quick way for when people at school can click if they want to learn about why I have to wear all my braces and splints to keep my body from falling into pieces. You did an amazing job with this video please keep up the great work
Sure, no problem! Hope it helps your friends at school to understand your EDS!
I have EDS and so does my mom and brother, it affects mainly my wrists and kneees. I have to wear a brace on my wrists a lot so I dont hyper extend them and tear any tissue
I wish you could have given the voice over. Thanks for the video anyways.
hello everyone i have Hypermobility Ehlers-Danlos syndrome and i’m polling other people with eds on whether they think we should change The NPRS to 1-15 for patient of eds please tell me what you think
This is so informative. Thank you!
hey i have a question what type of eds do you have and the symptoms i have eds type 4 anf im 17 and want to at least know someone like me and thanks for puting up this video its the best one i seen .
I have type2 but I'm one of the youngest here I'm only ten but I had got dognosed
I have eds I found out when I was six now in 11 I have had MRI that's like a cat scan I am flexible I get 3 hour nose bleeds headaches I can't do pe eds is bad but I'm glad I don't have vascular
I have it too
Getting a diagnosis even for hypermobile spectrum disorder is proving impossible for me right now. Conditions are this spectrum are so misunderstood 😢
Actually there are10 subtypes and geneticists are learning that MBA went actually cross over so type 3 may also experience some symptoms from type 4, for example...
Just been diagnosed with EDS very painful
I have hyper mobility eds
this track is really 🔥 . i actually produce a lot of similar instrumentals. id be down to work on a record with you - let me know
My knees, hands, feet, ankles, everything is a life of invisible pain.
I am sorry :(... I do understand... Have you talked to your Dr. about getting on a good Pain Care plan? EDS is an Intractable Pain Disease and well know to be extremely severe in pain that Needs to subdued for the health of the patient.
Are you going to update this video now that the types, classifications and diagnostics are different and add the new HSD? Not to mention, the ways EDS patients experience EDS varies widely by individual. This video kind of presents EDS as rather monolithic, and the "symptoms" as if everyone has them. They don't. Those look mostly like hEDS complications but not every hEDS patient has them and they can range from mild to severe. Don't really get how that is educational. But it's outdated now. Any viewers should visit the Ehlers Danlos Society site for all the up to date info since this is all loosely based on 20 year old info and read all the updated info recently published or they will be misinformed.
Eden Everly Eden Everly I will try to update/upload a new video, I now it's out of date. This video was intended to be a brief introduction to EDS. I know that this syndrome is very heterogenous, and it would be impssible to do a short and agreeable video including all the information. RUclips is not the right place to find reliable and exhaustive medical information, for that you have to go to Pubmed or something similar.
Even now with the new nosology, many patients don't fit in any category nor have all the symptoms. I'm Med student, and I could do a video explaining the whole new classification and all the diagnoatic criteria but this wasn't/isn't my aim. This is only a short overview which may help to get an idea about what EDS is. I myself have a very rare type of EDS, and I don't match many of the symptoms but not because of that most of the information I find (which is almost exclusively about hEDS) is misleading. All diseases present themselves as very heterogenous, even the flu.
I will take into account your critique, thank you.
where did u get this video? pls tell me...
Anand Raj It's my own creation
what is life expectancy??
is it very much painful???
life expectancy varies based on the version of EDS that you have and yes it can be very painful. my mom, sister and I all have it and we're constantly dealing with our joints popping out of place and our ribs moving (when I'm lying down on my side, a majority of the time I can feel my ribs moving around and if I press down on them, they'll move and sometimes my ribs will move around inside my body and the right part of my ribs will move closer to the center of my stomach and it causes excruciating pain). EDS also causes early arthritis so my mom has arthritis in her wrists and hands and I have it in my feet and my bones in my feet are slowly crumbling so I have to get braces to wear for the rest of my life. I also have a really high arch in my feet that was so high that all of my weight was put onto the balls of my feet and it was incredibly painful so I had to get surgeries on my feet from 2018-2019 and will likely have to get more in the future
All thanks to Dr Aba for curing me from EDS Am forever grateful
There’s a CURE? The video said there wasn’t!
I have EDS and I tell people that I’m a house under construction and I was built with bad mortar.
im 12 and I have hypermobility and hyperlasticity
My daughter has been turned away by doctors because she is too complex. She has hEDS, epilepsy and adrenal insufficiency. She was just diagnosed with hEDS last week and is being genetically tested. She’s 37 and we have been battling this her whole life. Misdiagnosed with autism, adhd, fibromyalgia and been told it’s all in her head. Her biggest problem is overextending during seizures causing major problems with her ligaments, muscles, tendons and her teeth. But at least we finally have a diagnosis not based on her being nuts.
My mom is because this stupid disease in a wheel chair
👍
Ugh I hate reading
You are good painter not good teacher... You have a lot of knowledge but cannot explain why?
I have EDS hyper mobility