Hi, this is very informative and I really appreciate spreading awareness! I would like to point out that there are 14 different types of known EDS, not 4. EDS is rarely diagnosed, but it is not a rare condition (some types are rarer than others, but EDS itself is proving to be common) . They have identified the genes for all except Hypermobile type EDS, which is diagnosed using clinical signs and symptoms, so a probable diagnosis would be because you fit into the hEDS category (or maybe only fit into the Joint Hypermobility Syndrome due to the 2017 revision of classifications). Although vascular is the type most likely to be fatal, it may not necessarily be the most severe.
Hi! I just wanted to say THANK YOU for your attitude towards the patient and teaching others not to discredit their patients based on age, level of medical training, etc. :) The world needs more physicians with that attitude!! I am diagnosed with hEDS (type III), which is the most common type of EDS, and I have been referred to a geneticist to be tested for other types as well. I wanted to mention that while there is genetic testing for almost every type of EDS, there is no current genetic test available for hypermobility EDS (despite it being genetic). So the Beighton Scale is the most commonly used tool when evaluating for EDS; this, alongside patient and family history, plays a crucial role in the diagnostic process. I also wish more doctors could fully grasp the extent of EDS's degenerative nature. It is seemingly very difficult for most physicians to grasp how quickly degeneration can occur, especially when a patient appears to be physically "fine" at one visit and can barely walk a month later. But anywho...I'm getting a bit rant-y.... THANK YOU AGAIN FOR EDUCATING OTHERS ON THIS RARE CONDITION!
My doctors seem to not know about EDS other than a name and stretchy skin and the thumb pinky test and have no idea about the other horrible things that happen with it unless I show them printouts from EDS Foundation, and then I'm don't KNOW or think they ever follow up on it and realize that every single issue I get have or tolerate goes along with EDS. Sure not everybody gets half of the complications or co morbities but, if I read the information properly 66% get at least some of them. I've had so many it's unbelievable. I wonder if they will ever start calling the complications symptoms. I know in my case all of the complications are directly related to EDS. It overwhelmems the providers. It overwhelmes everybody that is in my immediate family as well.
Great point about muscle tensing to compensate - I was diagnosed with EDS a few years ago (that's why I watch channels like yours despite not being a med student!) and had to do a course with a specialist chest physio to relearn proper breathing technique. All of my vertebrae and ribs are so unstable that he said I was constantly tensing all my ab muscles etc to try to brace them and keep them in place and it was starting to give me a lot of respiratory issues that I had no idea could be related to my back problems.
Hearing you say don’t discount the knowledge patients bring with them is really refreshing. Those of us with Chronic conditions are living with symptoms 24/7 and we constantly research and try to find ways of helping ourselves. It’s so frustrating when professionals fob us off and disregard what we’re saying. I have EDS and my shoulder recently subluxed when I was putting my arm into my dressing gown. I’m struggling to adjust it and don’t have funds for a chiropractor. It’s driving me potty onto of other chronic pain in hips etc.
My other half has EDS and all her joints dislocated. Hers started with knee and jaw dislocate age 3 . Then hips in late teens and fingers. She was diagnosed with complex Regional pain syndrome and Dystonia. But she was diagnosed with EDS age 21. But she has so many syndromes as a result of eds problems . Replacement joint surgery doesn’t work left her with more problems. She’s has pots too . I don’t think it rare I think too many people misDiagnosed. She was seen by 18 different specialists before she got diagnosed. In U.K. it’s hard to get any doctor who wants to listen to her problems as they don’t have any sympathy/ empathy for her pains. A geneticist diagnosed her. Sadly our children have HMS/ EDS too
i have eds and constant dislocations. im 31yr male ive done back breaking work most of my life and did mixed martial arts as a child/teen. i wrestled in hs even. all without ever knowing my condition. ive been in 6 car accidents as well. ive had to learn to self manipulate because im the only person thus far to understand my body. the worst is a collar bone dislocation because it starts making blood rush to my head and i dont have long to adjust that as it makes me feel dizzy like im being choked out. ive had do tors tell me im crazy to the point i finally found comfort with pain management but even that was a battle to prove i wasnt some addict. for me the issue is if im still for too long i cramp and go out of place and if im too active i do the same. i wish good luch to everyone oth there like myself and if you wanna ask me anything go ahead!
My ankles were bandaged when I was a toddler so I could learn to walk. Never able to roller or ice skate because of unstable ankles. At 14 both my knees dislocated, my rt knee never returned. The pain with all this was excruciating and I have severe arthritis. My shoulders are also very unstable. Terrible pain in my lower back and neck. I'm looking for an exoskeleton for help
I have eds.. have been diagnosed since 98.. I'm 48.. I'm in excruciating pin half of the time.. pain..oops.. my hips Also.. have dislocated.. I love all alone I've no-one for the first time in my life.. since March of 2017.. its really hard.. I'm very alone.. but I'm still going.. I had my colon out June of 2017. my father came for a week after I got out of the hosp.thrn left.. back to Mexico where he lives permanently for the last few years.. his wives have been Spanish all except for his first and second.. my mom.. and the one he left her for.. yeah really nice huh.. anyway I started a pill for sleep because they won't let My have my Ambien with the strong pain meds. anymore.. thispill caused a hundred pound weight gain.. me.. omgosh!!from 110.. to two ten.. I'm slowly weening off so my thyroid will hopefully go back to normal.. and my metabolism.. and the weight should fall off.. once I'm done with these entirely cal seroquel.. 400 milgms per day.. so I'm taking 300.. for another week then I'm down to 250 and so forth.. I have t mo e com this hell hole I moved into not knowing it has bed bugs in it!!Yes bed bugs . with my disability.. so I pay 300.00 a month.. plus I ha e to have this taxi company lady go to the store for all of my food ect.. eight dollars per trip.. to the Pharmacy is 14 dollars.. I'm so sad I need friends.. all of my friends who don't have tho ditched me.. except f two.. and they caused me trouble
Angela Brown ... I am having lots of problems getting around too, and depend on a husband who is rarely around. I think I need a Senior Helper or something. Ask your nurse or pastor to give you a list of organizations that could help...such as 'meals on wheels', ect. Many of them are free to senior citizens...or disabled people.
Hi, this is very informative and I really appreciate spreading awareness! I would like to point out that there are 14 different types of known EDS, not 4. EDS is rarely diagnosed, but it is not a rare condition (some types are rarer than others, but EDS itself is proving to be common)
.
They have identified the genes for all except Hypermobile type EDS, which is diagnosed using clinical signs and symptoms, so a probable diagnosis would be because you fit into the hEDS category (or maybe only fit into the Joint Hypermobility Syndrome due to the 2017 revision of classifications).
Although vascular is the type most likely to be fatal, it may not necessarily be the most severe.
Do not discount the information a patient bring in with them. I think this is so important. Great video
Hi! I just wanted to say THANK YOU for your attitude towards the patient and teaching others not to discredit their patients based on age, level of medical training, etc. :) The world needs more physicians with that attitude!!
I am diagnosed with hEDS (type III), which is the most common type of EDS, and I have been referred to a geneticist to be tested for other types as well. I wanted to mention that while there is genetic testing for almost every type of EDS, there is no current genetic test available for hypermobility EDS (despite it being genetic). So the Beighton Scale is the most commonly used tool when evaluating for EDS; this, alongside patient and family history, plays a crucial role in the diagnostic process.
I also wish more doctors could fully grasp the extent of EDS's degenerative nature. It is seemingly very difficult for most physicians to grasp how quickly degeneration can occur, especially when a patient appears to be physically "fine" at one visit and can barely walk a month later.
But anywho...I'm getting a bit rant-y.... THANK YOU AGAIN FOR EDUCATING OTHERS ON THIS RARE CONDITION!
Thank you for your kind words... the patient comes first and usually knows the most about their condition
My doctors seem to not know about EDS other than a name and stretchy skin and the thumb pinky test and have no idea about the other horrible things that happen with it unless I show them printouts from EDS Foundation, and then I'm don't KNOW or think they ever follow up on it and realize that every single issue I get have or tolerate goes along with EDS. Sure not everybody gets half of the complications or co morbities but, if I read the information properly 66% get at least some of them. I've had so many it's unbelievable. I wonder if they will ever start calling the complications symptoms. I know in my case all of the complications are directly related to EDS. It overwhelmems the providers. It overwhelmes everybody that is in my immediate family as well.
Great point about muscle tensing to compensate - I was diagnosed with EDS a few years ago (that's why I watch channels like yours despite not being a med student!) and had to do a course with a specialist chest physio to relearn proper breathing technique. All of my vertebrae and ribs are so unstable that he said I was constantly tensing all my ab muscles etc to try to brace them and keep them in place and it was starting to give me a lot of respiratory issues that I had no idea could be related to my back problems.
Hearing you say don’t discount the knowledge patients bring with them is really refreshing. Those of us with Chronic conditions are living with symptoms 24/7 and we constantly research and try to find ways of helping ourselves. It’s so frustrating when professionals fob us off and disregard what we’re saying. I have EDS and my shoulder recently subluxed when I was putting my arm into my dressing gown. I’m struggling to adjust it and don’t have funds for a chiropractor. It’s driving me potty onto of other chronic pain in hips etc.
align your spine along with the corner of a wall and stretch thats what helps me when this happens
My other half has EDS and all her joints dislocated. Hers started with knee and jaw dislocate age 3 . Then hips in late teens and fingers. She was diagnosed with complex Regional pain syndrome and Dystonia. But she was diagnosed with EDS age 21. But she has so many syndromes as a result of eds problems . Replacement joint surgery doesn’t work left her with more problems. She’s has pots too . I don’t think it rare I think too many people misDiagnosed. She was seen by 18 different specialists before she got diagnosed. In U.K. it’s hard to get any doctor who wants to listen to her problems as they don’t have any sympathy/ empathy for her pains. A geneticist diagnosed her. Sadly our children have HMS/ EDS too
i have eds and constant dislocations. im 31yr male ive done back breaking work most of my life and did mixed martial arts as a child/teen. i wrestled in hs even. all without ever knowing my condition. ive been in 6 car accidents as well. ive had to learn to self manipulate because im the only person thus far to understand my body. the worst is a collar bone dislocation because it starts making blood rush to my head and i dont have long to adjust that as it makes me feel dizzy like im being choked out. ive had do tors tell me im crazy to the point i finally found comfort with pain management but even that was a battle to prove i wasnt some addict. for me the issue is if im still for too long i cramp and go out of place and if im too active i do the same. i wish good luch to everyone oth there like myself and if you wanna ask me anything go ahead!
I actually have suffered 190 full and partial dislocations and from this ladies experience I think I have eds
My ankles were bandaged when I was a toddler so I could learn to walk. Never able to roller or ice skate because of unstable ankles. At 14 both my knees dislocated, my rt knee never returned. The pain with all this was excruciating and I have severe arthritis. My shoulders are also very unstable. Terrible pain in my lower back and neck. I'm looking for an exoskeleton for help
I have eds.. have been diagnosed since 98.. I'm 48.. I'm in excruciating pin half of the time.. pain..oops.. my hips Also.. have dislocated.. I love all alone I've no-one for the first time in my life.. since March of 2017.. its really hard.. I'm very alone.. but I'm still going.. I had my colon out June of 2017.
my father came for a week after I got out of the hosp.thrn left.. back to Mexico where he lives permanently for the last few years.. his wives have been Spanish all except for his first and second.. my mom.. and the one he left her for.. yeah really nice huh.. anyway I started a pill for sleep because they won't let My have my Ambien with the strong pain meds. anymore.. thispill caused a hundred pound weight gain.. me.. omgosh!!from 110.. to two ten.. I'm slowly weening off so my thyroid will hopefully go back to normal.. and my metabolism.. and the weight should fall off.. once I'm done with these entirely cal seroquel.. 400 milgms per day.. so I'm taking 300.. for another week then I'm down to 250 and so forth.. I have t mo e com this hell hole I moved into not knowing it has bed bugs in it!!Yes bed bugs
. with my disability.. so I pay 300.00 a month.. plus I ha e to have this taxi company lady go to the store for all of my food ect.. eight dollars per trip.. to the Pharmacy is 14 dollars.. I'm so sad I need friends.. all of my friends who don't have tho ditched me.. except f two.. and they caused me trouble
Angela Brown ... I am having lots of problems getting around too, and depend on a husband who is rarely around. I think I need a Senior Helper or something. Ask your nurse or pastor to give you a list of organizations that could help...such as 'meals on wheels', ect. Many of them are free to senior citizens...or disabled people.
Love from Norway, from a fellow Zebra. ( F❤️💞💓, 43, diag: Hypermobility syndrom).
I don't know why but when I was 6 yrs old I found my finger could turn backwards easily.
And I could pop out my soldier joints easily what should I do