I really wish we had this care available in the UK. My experience of everything eds related has been handled so disgracefully honestly. I'm still getting told there's no treatment for it.
Mr-Mrs Curls-n-Kinkz - I’m so sorry it’s so hard. :( It’s not super easy here either unless you have access to people who specialize in these types of illnesses. I was lucky because my uncle is a surgeon and was able to get me in with the best specialists. We need a fix in healthcare overall for all people. I hope you are able to get the care you need. It might be worth reaching out to some of the specialists here. It’s possible they may know of someone in the UK and can direct you to them for care. I will ask my uncle if he is aware of anyone in the UK as he has colleague all over the world.
@@nikkimariewrite7596 that's incredibly helpful of you to ask. Unfortunately I'm not in the position to have private healthcare. I've been this way since my teens & never got to a point I could gain the management to live independently or study long enough to get uni. I was misdiagnosed with fibro & conversion disorder in my early 20's & now have hypermobility spectrum disorder as my diagnosis, my body is phsyically twisted & partially dislocating more often but dr's are telling me I'm too rare & there too many joints that need treatment to get it.
@@MrsXx you are not alone. I live in Syracuse New York where there are even 4 major hospitals and a medical university and there is no one close other than New York City which is about a 5 hour drive but of course longer due to pain. There isn't a place in my body that doesn't hurt. The best thing I have found is to do a ton of research on my own of treatments and have had to give my providers links to research that may be beneficial for me. Some of my best doctors are the ones who don't know anything but they are willing to learn and work with me.
I was diagnosed after my second pregnancy. My ribs had subluxation with both pregnancies and it was horrible. Second pregnancy was late 30’s and I could barely get off the couch not because of my belly but because of the relaxin hormones made my joints were so loose! I have the GI isssues, scoliosis, POTS, mast cell issues, subluxation of my left hip and left shoulder. It’s genetic because my mom has it too. As a kid I was always doing tricks showing how flexible I was...now that I’m old. Pain. At least I know what this is now because I thought I was nuts for awhile.
Yes, this happened to me too (with the pregnancy issues) I couldn't sit, laying down helped a little and my labor and delivery was super, super fast (my ribs are deformed on one side now too) Girl I felt crazy too! My youngest child has this too at least she knows she's not crazy lol. Best wishes to you :)
Very very difficult when you have no support, ESPECIALLY from those we take care of and love the most. I lay on the floor and cry and my family walks over me. LITERALLY. They STEP over my broken, crying body. I have developed severe mental illness due to being thought of as lazy, drug seeking and generally not utilizing my potential. I’ve also developed a phobia with doctors after being brushed off and referred out for 17 years. I’m just fading away painfully. If I were a dog they’d have put me down years ago.
I'm so sorry to hear that has been your experience. Feeling like your family has abandoned you in your lowest moments is very painful and I definitely can relate. I hope you don't mind a suggestion-- seeing a naturopath was life changing for me and it could be helpful for you too. My naturopath actually listens to me and almost doubles as a health coach, listening to my theories and providing support and suggestions on lifestyle changes and supplements that could help. I still struggle, but having someone who has the medical background to help me figure out what's going on, and the naturopathic background to respect me as a patient and support lifestyle changes that are needed is definitely a game changer. Wishing you so much love and healing in your journey. Stress and emotional pain definitely makes things worse.
So very sorry they act like that. We don’t deserve it. I completely understand and send you hugs of support. The other person who replied was very smart. Good luck with that and know you are not the only one who lives with family like this.
Sometimes they are mentally exhausted as well. It's not an excuse for the behavior, however they do not know how to help us unless we tell them. I sublux my spine at many levels, my ribs, my hips, my shoulder and ankles. I also have chiari Malformation and pseudotumor cerebri. I see every specialist under the sun. The most mental relief I had was just speaking to someone who also has EDS. I felt like I was not alone. She also gave me ideas of what she does to help prevent subluxation in the same joints and I shared what I do as well. The best thing would be to find a Facebook group or support group. It was nice to have someone who understands. We even joked about what was the stupidest thing that made a joint pop out. Hers was her shoulder while wiping her back side. Mine was my ribs by just taking off my shorts. It may sound silly however I felt a lot of mental relief to not feel alone. I would be more than happy to talk with you anytime.
I'm 59. Female, feel like I have a form of this, rx fibromyalgia 11 years ago, pain while asleep, few hours in am feel like hell. Gets better during day, then worsens later at night. On disability for disc issues, neck, thoracic and lumber bulging. Tires of being tired & sick. Food intolerance, mild gi issues. Idk how to feel better. 😕
In summary, the public needs education but far more important is for medical schools to teach that even if specializing is where the money and research opportunities are, primary providers can't be the only ones expected to know that the knee bone is connected to the thighbone--and lies pretty close to some blood vessels, nerves, ligaments, skin...immune cells... "Wholistic" shouldn't just mean "the yoga and mindfulness plus acai berries those worried well are into". It should mean "Do not forget that the part you prefer is part of interconnected systems within systems that don't cease to be relevant or worthy of you keeping even somewhat up to date just because they don't seem to---SEEM to!--fall into your funnel." It's too much to memorize; I know. Just stay aware--and buy--and USE--software. You could stumble upon a miracle cure just because you, a cardiologist or gynecologist or ophthalmologist, went to an oncology conference just for the hell of it, and actually listened.
I have to say that as a person with 3 rare disorders (2 being EDS and CVID), and having had a very rare super-aggressive cancer and interstitial cystitis, I have had to see many specialists over the years. I have most things that can occur with EDS, even "funnel chest", flat feet, wobbly ankles, poor proprioception, premature bunions, missing/never developed molars, strabismus, a high arched palate, TMJ--and that's just the head and feet, LOL. I don't bother with 90% of it. But I have seen a uro-gyn surgeon due to severe prolapse without any pregnancies...another 2 for fissures and abscesses along the GI tract...1 for sphincter repairs that didn't heal and stitches that ripped through instead.. Even a hematologist for something called MGUS. I don't seek them out for anything to do with EDS unless I am referred for an injury that is typical of EDS. It typically going to be treated the same as any other patient, regardless, or not treated at all. Rapidly-worsening mid-life scoliosis, for example--not treated at all. I learned about the Schroth method (for conservative management with specialized physical therapy), and have an appointment...My high-profile bone doctor(s) , who is actually a good doctor, had never heard of it! . I don't often find it useful to share my history of EDS, or CVID, for that matter. I'm reluctant, even when I have to, because it is usually ignored and I may then be treated like a liability risk instead of a slightly different or special-needs patient. Even the known EDS/CVID/etc., information doesn't help them diagnose anything or see safety precautions that need to be taken, such as with major surgery (Thus I was positioned twice in surgery/recovery such that a loose joint capsule allowed part of the joint to press on a nerve, damaging the function of a limb for months and causing severe pain.) I was sent to a rheumatologist for signs of autoimmune disease; she told me that because I could put my palms flat on the floor, my back was in good shape for age 42 and I did not need a work-up. (I wasn't complaining of back pain!). I have what the geneticist described as (back then) classical/Type 3...not sure what it would be called now. But let me tell you, even though all of them are at a MAJOR medical school and teaching hospital--like 1500 beds--not one has known much about EDS, including surgeons who treated me for chiropractic neck injury, shoulder capsules tears, and multiple low-impact orthopedic injuries. Not one MD/DO has suggested a rheumatologist for general oversight of care. When patients say they have a team of specialists because they have EDS, or CVID (both having widespread consequences all over the body of equal significance), I don't know who they are seeing. Either I don't complain enough or there is not one of the 20-plus MDs/DOs I've seen over 15 years (counting insurance changes) at this big-name university hospital who is aware of the connection between most of the problems I have. There doesn't seem to be anyone who thinks I should see someone who really knows CVID or EDS, let alone both. Likewise who is taking their complaints seriously or considering either the EDS or CVID to be an issue at all, other than needing to see an immunologist to qualify for immunoglobulin replacement, or to advise them about sports. I seldom complain of pain or fatigue because I HAVE to work full time, regardless, and it can be a social barrier to draw attention to health complaints, so stoicism is no doubt part of the reason. But there is no excuse whatsoever for an orthopedic surgeon or spine surgeon to not know anything about EDS! I have done a ton of reading over the years and don't mind explaining just enough to protect myself from another injury due to practitioner ignorance (although most don't appreciate it, no matter how tentatively or diplomatically it is said). It's sad I have to do that with all of them, and that it's risky to do so. Am I the only one? ........................................................................................................................................................................................................................................ Footnote: I DO WANT TO ASK THE PUBLIC: I have noticed some really odd correlations that keep popping up between 2 or more disorders. I told the immunologist that diagnosed the CVID (one kind of primary immune deficiency). For example, between EDS and CVID together have overlapping less common types of/sites for cancers. I found my way backward to articles showing that others had found a connection between EDS and vitamin D malabsorption, for example, because my vitamin D doctors have never mentioned it once and probably have no clue. I read it and other connections first on sites where experts already knew the connection and discussed it as a possible area of research or FYI education for us patients. I would like to hear from anyone else who has both CVID and EDS! Have you had an unusual cancer? Interstitial cystitis? Dry eyes not due to loose eyelid closure but thin tears that evaporate too quickly? Unusual reactions/injuries to chemotherapy or biologicals like pembrolizumab? And other things...
How to live life to the fullest with Elher's Danlos Disjointed Hypermobility spectrum disorders fatigue and management. Not often available on Amazon so I don't know where to purchase them.
![ละลาย (LALALYE) - DAOU PITTAYA ต้าห์อู๋ พิทยา [OFFICIAL MV]](http://i.ytimg.com/vi/wo6r9TgausI/mqdefault.jpg)
I really wish we had this care available in the UK. My experience of everything eds related has been handled so disgracefully honestly. I'm still getting told there's no treatment for it.
Mr-Mrs Curls-n-Kinkz - I’m so sorry it’s so hard. :( It’s not super easy here either unless you have access to people who specialize in these types of illnesses. I was lucky because my uncle is a surgeon and was able to get me in with the best specialists. We need a fix in healthcare overall for all people. I hope you are able to get the care you need. It might be worth reaching out to some of the specialists here. It’s possible they may know of someone in the UK and can direct you to them for care. I will ask my uncle if he is aware of anyone in the UK as he has colleague all over the world.
@@nikkimariewrite7596 that's incredibly helpful of you to ask. Unfortunately I'm not in the position to have private healthcare. I've been this way since my teens & never got to a point I could gain the management to live independently or study long enough to get uni. I was misdiagnosed with fibro & conversion disorder in my early 20's & now have hypermobility spectrum disorder as my diagnosis, my body is phsyically twisted & partially dislocating more often but dr's are telling me I'm too rare & there too many joints that need treatment to get it.
@@MrsXx you are not alone. I live in Syracuse New York where there are even 4 major hospitals and a medical university and there is no one close other than New York City which is about a 5 hour drive but of course longer due to pain. There isn't a place in my body that doesn't hurt. The best thing I have found is to do a ton of research on my own of treatments and have had to give my providers links to research that may be beneficial for me. Some of my best doctors are the ones who don't know anything but they are willing to learn and work with me.
Thanks for this video. I have EDS and Iam very thankful. Just one thing, please donot use the light blue in your presentation. It's hard to see.
I was diagnosed after my second pregnancy. My ribs had subluxation with both pregnancies and it was horrible. Second pregnancy was late 30’s and I could barely get off the couch not because of my belly but because of the relaxin hormones made my joints were so loose! I have the GI isssues, scoliosis, POTS, mast cell issues, subluxation of my left hip and left shoulder. It’s genetic because my mom has it too. As a kid I was always doing tricks showing how flexible I was...now that I’m old. Pain. At least I know what this is now because I thought I was nuts for awhile.
How can I get my daughter to get help. What doctor will diagnosis her this well?
Yes, this happened to me too (with the pregnancy issues) I couldn't sit, laying down helped a little and my labor and delivery was super, super fast (my ribs are deformed on one side now too) Girl I felt crazy too! My youngest child has this too at least she knows she's not crazy lol. Best wishes to you :)
Very very difficult when you have no support, ESPECIALLY from those we take care of and love the most. I lay on the floor and cry and my family walks over me. LITERALLY. They STEP over my broken, crying body. I have developed severe mental illness due to being thought of as lazy, drug seeking and generally not utilizing my potential. I’ve also developed a phobia with doctors after being brushed off and referred out for 17 years. I’m just fading away painfully. If I were a dog they’d have put me down years ago.
I'm so sorry to hear that has been your experience. Feeling like your family has abandoned you in your lowest moments is very painful and I definitely can relate. I hope you don't mind a suggestion-- seeing a naturopath was life changing for me and it could be helpful for you too. My naturopath actually listens to me and almost doubles as a health coach, listening to my theories and providing support and suggestions on lifestyle changes and supplements that could help. I still struggle, but having someone who has the medical background to help me figure out what's going on, and the naturopathic background to respect me as a patient and support lifestyle changes that are needed is definitely a game changer. Wishing you so much love and healing in your journey. Stress and emotional pain definitely makes things worse.
So very sorry they act like that. We don’t deserve it. I completely understand and send you hugs of support. The other person who replied was very smart. Good luck with that and know you are not the only one who lives with family like this.
Sometimes they are mentally exhausted as well. It's not an excuse for the behavior, however they do not know how to help us unless we tell them. I sublux my spine at many levels, my ribs, my hips, my shoulder and ankles. I also have chiari Malformation and pseudotumor cerebri. I see every specialist under the sun. The most mental relief I had was just speaking to someone who also has EDS. I felt like I was not alone. She also gave me ideas of what she does to help prevent subluxation in the same joints and I shared what I do as well. The best thing would be to find a Facebook group or support group. It was nice to have someone who understands. We even joked about what was the stupidest thing that made a joint pop out. Hers was her shoulder while wiping her back side. Mine was my ribs by just taking off my shorts. It may sound silly however I felt a lot of mental relief to not feel alone. I would be more than happy to talk with you anytime.
Mate :( my life is exactly the same. I was a world beater,now a burden on my family.
Very informative. Thank you!
This is fascinating!
There's mention of a resource list of gadgets and devices to help. Is this available somewhere? I'm also interested in shoe recommendations.
I'm 59. Female, feel like I have a form of this, rx fibromyalgia 11 years ago, pain while asleep, few hours in am feel like hell. Gets better during day, then worsens later at night. On disability for disc issues, neck, thoracic and lumber bulging. Tires of being tired & sick.
Food intolerance, mild gi issues. Idk how to feel better. 😕
In summary, the public needs education but far more important is for medical schools to teach that even if specializing is where the money and research opportunities are, primary providers can't be the only ones expected to know that the knee bone is connected to the thighbone--and lies pretty close to some blood vessels, nerves, ligaments, skin...immune cells... "Wholistic" shouldn't just mean "the yoga and mindfulness plus acai berries those worried well are into". It should mean "Do not forget that the part you prefer is part of interconnected systems within systems that don't cease to be relevant or worthy of you keeping even somewhat up to date just because they don't seem to---SEEM to!--fall into your funnel." It's too much to memorize; I know. Just stay aware--and buy--and USE--software. You could stumble upon a miracle cure just because you, a cardiologist or gynecologist or ophthalmologist, went to an oncology conference just for the hell of it, and actually listened.
I have to say that as a person with 3 rare disorders (2 being EDS and CVID), and having had a very rare super-aggressive cancer and interstitial cystitis, I have had to see many specialists over the years. I have most things that can occur with EDS, even "funnel chest", flat feet, wobbly ankles, poor proprioception, premature bunions, missing/never developed molars, strabismus, a high arched palate, TMJ--and that's just the head and feet, LOL. I don't bother with 90% of it. But I have seen a uro-gyn surgeon due to severe prolapse without any pregnancies...another 2 for fissures and abscesses along the GI tract...1 for sphincter repairs that didn't heal and stitches that ripped through instead.. Even a hematologist for something called MGUS. I don't seek them out for anything to do with EDS unless I am referred for an injury that is typical of EDS. It typically going to be treated the same as any other patient, regardless, or not treated at all. Rapidly-worsening mid-life scoliosis, for example--not treated at all. I learned about the Schroth method (for conservative management with specialized physical therapy), and have an appointment...My high-profile bone doctor(s) , who is actually a good doctor, had never heard of it! . I don't often find it useful to share my history of EDS, or CVID, for that matter. I'm reluctant, even when I have to, because it is usually ignored and I may then be treated like a liability risk instead of a slightly different or special-needs patient. Even the known EDS/CVID/etc., information doesn't help them diagnose anything or see safety precautions that need to be taken, such as with major surgery (Thus I was positioned twice in surgery/recovery such that a loose joint capsule allowed part of the joint to press on a nerve, damaging the function of a limb for months and causing severe pain.) I was sent to a rheumatologist for signs of autoimmune disease; she told me that because I could put my palms flat on the floor, my back was in good shape for age 42 and I did not need a work-up. (I wasn't complaining of back pain!). I have what the geneticist described as (back then) classical/Type 3...not sure what it would be called now. But let me tell you, even though all of them are at a MAJOR medical school and teaching hospital--like 1500 beds--not one has known much about EDS, including surgeons who treated me for chiropractic neck injury, shoulder capsules tears, and multiple low-impact orthopedic injuries. Not one MD/DO has suggested a rheumatologist for general oversight of care. When patients say they have a team of specialists because they have EDS, or CVID (both having widespread consequences all over the body of equal significance), I don't know who they are seeing. Either I don't complain enough or there is not one of the 20-plus MDs/DOs I've seen over 15 years (counting insurance changes) at this big-name university hospital who is aware of the connection between most of the problems I have. There doesn't seem to be anyone who thinks I should see someone who really knows CVID or EDS, let alone both. Likewise who is taking their complaints seriously or considering either the EDS or CVID to be an issue at all, other than needing to see an immunologist to qualify for immunoglobulin replacement, or to advise them about sports. I seldom complain of pain or fatigue because I HAVE to work full time, regardless, and it can be a social barrier to draw attention to health complaints, so stoicism is no doubt part of the reason. But there is no excuse whatsoever for an orthopedic surgeon or spine surgeon to not know anything about EDS! I have done a ton of reading over the years and don't mind explaining just enough to protect myself from another injury due to practitioner ignorance (although most don't appreciate it, no matter how tentatively or diplomatically it is said). It's sad I have to do that with all of them, and that it's risky to do so. Am I the only one? ........................................................................................................................................................................................................................................ Footnote: I DO WANT TO ASK THE PUBLIC: I have noticed some really odd correlations that keep popping up between 2 or more disorders. I told the immunologist that diagnosed the CVID (one kind of primary immune deficiency). For example, between EDS and CVID together have overlapping less common types of/sites for cancers. I found my way backward to articles showing that others had found a connection between EDS and vitamin D malabsorption, for example, because my vitamin D doctors have never mentioned it once and probably have no clue. I read it and other connections first on sites where experts already knew the connection and discussed it as a possible area of research or FYI education for us patients. I would like to hear from anyone else who has both CVID and EDS! Have you had an unusual cancer? Interstitial cystitis? Dry eyes not due to loose eyelid closure but thin tears that evaporate too quickly? Unusual reactions/injuries to chemotherapy or biologicals like pembrolizumab? And other things...
Can this lady or gentleman who spoke or the Foundation recommend a good book on the topic with some of this info?
How to live life to the fullest with Elher's Danlos
Disjointed
Hypermobility spectrum disorders fatigue and management.
Not often available on Amazon so I don't know where to purchase them.
*Living Life to the Fullest by Kevin Muldowney, the speaker
*Disjointed is edited by Diana Jovin
I found both on Amazon
They write their own book with the PT program
Where is this office?
@ Mrs Paula Torres I believe it's in Rhode Island.
You wouldn't know anyone in Melbourne Australia by any chance? I'm sure we have physical therapists here that would help.
This guy needs to come to the U.K. to educate the GPs as first base and then the physios 😂
Thanks for sharing ♥️ from Gafsa Bux 🦓♿
❤