I recently worked with a physio therapist. After a few months of painful stretches and strengthening exercise, he tells me that I am hypermobile and I should let my Dr know. I did, we started with Arthritis testing and all of them came out negative. She referred me to an Osteopath and I can't wait to see what test they have for me. I am privileged to have an amazing Dr, and hope that everyone gets to have one like mine.
I've been super fortunate where I live, I was diagnosed quite early and have access to specialists and some of the the proper treatments, but I still can barely function, spend most of my time in my bed or at appointments. I can't work so I don't have an income so I cant afford everything I need to get better. It's hard enough to get out of bed in the morning,and everything else on top makes me feel, and appear, absolutely crazy. Even my best friend, who has watched me go through my journey the last six years, struggles to understand and empathize with what I go through. I feel completely isolated from others and don't see much point in living, however, I really appreciate the work Lara does to spread information on our conditions, it means a lot to me.
I agree entirely with you Sophia. You are blessed to have been diagnosed so quickly. I didn't get diagnosed until after I had catastrophic birth injuries from having my son 12yrs ago. I caused permanent damage that I still live with to this day by being pregnant and not knowing I had the risks that go with it from EDS. Also have had multiple major surgeries too, and had nerve damage from one of my surgeries which complicated things even more. If I would have known sooner I wouldn't have gone into the nursing field as I can physically no longer do the tasks required, and I would not have gotten pregnant and given birth using my body as I would have known the risks to both my child and myself (I wouldn't have wanted to risk passing these genes on to my kiddo either had I known). I get really tired of people that are healthy not understanding how much joy is sucked out of life when you cannot do normal things and are constantly bed bound and in pain. They take for granted simple things like walking around, picking things up, moving/bending, pooping/peeing/digesting well, making love, exercising, getting good sleep, etc etc. When one of these healthy people gets sick or has an injury for a few days to a couple of months they totally tend to flip out and get depressed, meanwhile we have been living like this for decades and they don't understand why that might get us down, especially when we are supposed to be young and healthy and in the prime of life?? If I had lived a good long life and was having these health issues as a result of old age it would be a lot easier to bear. I feel like I am prematurely elderly and it sucks. I agree when it gets past a certain point where you cannot function and that won't change, what is the point? I know that the reason I am still here is for my son to raise him, so I am toughing it out for now. But if I do not get much better (or even worse), then I don't know how the hell i will make it through decades more of this with aging occurring on top of that.
I am so glad these videos exist. I feel like people just think I’m whining about being sore or sick to my stomach. You commented on one of my Instagram posts and I found this video through that. I haven’t been able to afford physical therapy for the most part because I live in the US, even though I have Medicare. My doctor doesn’t know much at all about it, but does pain management for me. He works at a low income clinic and I appreciate that he tries like he does. Thank you for all you do, Laura. I hope someone watches this and understands me better. Because I’m also diagnosed with mental illness I feel that I’m taken much less seriously by those close to me and by doctors in emergency rooms or doctors in general. I’m going to watch all of your videos.
I was traveling this life with spinal issues and had an electrical accident which cooked my heart burn up my hearts electrical system so now I have a pacemaker. I thought my stomach issues were from the meds that they put me on ( blood thinners). Gerd was a constant issue. Pain in my neck, back knees ankles feet and stomach ( small intestines diverticulitis) so many things, headaches, then eye issues I thought came from a Tia. I’ve been diagnosed as autoimmune and scleritis in my eyes. I was watching videos one day and saw 5 young adults talking about their disease called EDS. A light went off for me. I talked to my family Dr and he was so surprised I never complained about my dislocations in my joints. I’ve always just slipped them back in place all my life. He knew I had back pain, knew I had stomach issues. Knew my knees would swell up if I twisted it wrong doing chores, but I showed him my flexibility with my thumb to my wrist as a 60 year old it still moves that easily. He sent me to a geneticist and sure enough I’ve got a clear case of Hyper Elhers Danlos syndrome. I’m in special therapy trying to build up core strength in my hips first but it surprises me all the time at how painful it is to do them. They’re simple but they HURT.
Almost 40 and finally diagnosed. Been chronically sick all my life. No dr has noticed this …..till my new doctor said I think you may have this. He said genetic testing would show it. He noticed things about me and asked questions no one else did. Since I was a child…..chronic gastrointestinal disorders all my life. Need digestive aides every meal. Nausea all my life. Vomited often as a child. Can’t eat large meals . Almost 39 and now diagnosed.
Thank you for creating these videos. I am looking for one to share with my family and friends so they know what it is and why it can be so debilitating
Hello, I’m 76. In the last 2 years I’ve discovered EDS, and finally my life has been put together. I was always called weird, picky, sensitive, and I’m sure there were those who thought I was a malingerer or had a mental problem. And still today I have not found a doctor willing to accept that I have something wrong with me. I may or may not have EDS, but why won’t physicians investigate?
I may have marfan or EDS. My muscle tone is low I have scoliosis, I have alot of scars. My neck is unstable. Sometimes I have problems with not really feeling my bladder. I'm 190cm. My fingers are long and thin.
Definitely see a doc. Usually the wait is forever to see the genetic/EDS docs, so seeing a rheumatologist that actually will see EDS (many won't), can help speed up the process of getting diagnosed and starting some form of helpful treatment. Then you can take the diagnosis to a primary care doc that understands what the heck EDS is, and they can refer you out to all the different types of specialists you will need for the various things that come up when your body acts ornery, and you can have some basic meds as needed for pain, spasms, sleep, digestion, anxiety, etc etc.
I appreciate the video but the words "rare condition" is what most people (drs) seem to remember. I think it is more rarely diagnosed. Hypermobility Spectrum Disorder is probably far more diagnosed than EDS...and should be mentioned.
I recently worked with a physio therapist. After a few months of painful stretches and strengthening exercise, he tells me that I am hypermobile and I should let my Dr know. I did, we started with Arthritis testing and all of them came out negative. She referred me to an Osteopath and I can't wait to see what test they have for me.
I am privileged to have an amazing Dr, and hope that everyone gets to have one like mine.
Bless You right back with amazing care. Osteopathic care is the bees knees. The years of study are evident.
I've been super fortunate where I live, I was diagnosed quite early and have access to specialists and some of the the proper treatments, but I still can barely function, spend most of my time in my bed or at appointments. I can't work so I don't have an income so I cant afford everything I need to get better. It's hard enough to get out of bed in the morning,and everything else on top makes me feel, and appear, absolutely crazy. Even my best friend, who has watched me go through my journey the last six years, struggles to understand and empathize with what I go through. I feel completely isolated from others and don't see much point in living, however, I really appreciate the work Lara does to spread information on our conditions, it means a lot to me.
I agree entirely with you Sophia. You are blessed to have been diagnosed so quickly. I didn't get diagnosed until after I had catastrophic birth injuries from having my son 12yrs ago. I caused permanent damage that I still live with to this day by being pregnant and not knowing I had the risks that go with it from EDS. Also have had multiple major surgeries too, and had nerve damage from one of my surgeries which complicated things even more. If I would have known sooner I wouldn't have gone into the nursing field as I can physically no longer do the tasks required, and I would not have gotten pregnant and given birth using my body as I would have known the risks to both my child and myself (I wouldn't have wanted to risk passing these genes on to my kiddo either had I known).
I get really tired of people that are healthy not understanding how much joy is sucked out of life when you cannot do normal things and are constantly bed bound and in pain. They take for granted simple things like walking around, picking things up, moving/bending, pooping/peeing/digesting well, making love, exercising, getting good sleep, etc etc. When one of these healthy people gets sick or has an injury for a few days to a couple of months they totally tend to flip out and get depressed, meanwhile we have been living like this for decades and they don't understand why that might get us down, especially when we are supposed to be young and healthy and in the prime of life??
If I had lived a good long life and was having these health issues as a result of old age it would be a lot easier to bear. I feel like I am prematurely elderly and it sucks. I agree when it gets past a certain point where you cannot function and that won't change, what is the point? I know that the reason I am still here is for my son to raise him, so I am toughing it out for now. But if I do not get much better (or even worse), then I don't know how the hell i will make it through decades more of this with aging occurring on top of that.
Thanks to You all for talking about EDS
I am so glad these videos exist. I feel like people just think I’m whining about being sore or sick to my stomach. You commented on one of my Instagram posts and I found this video through that. I haven’t been able to afford physical therapy for the most part because I live in the US, even though I have Medicare. My doctor doesn’t know much at all about it, but does pain management for me. He works at a low income clinic and I appreciate that he tries like he does. Thank you for all you do, Laura. I hope someone watches this and understands me better. Because I’m also diagnosed with mental illness I feel that I’m taken much less seriously by those close to me and by doctors in emergency rooms or doctors in general. I’m going to watch all of your videos.
instaBlaster...
I was traveling this life with spinal issues and had an electrical accident which cooked my heart burn up my hearts electrical system so now I have a pacemaker. I thought my stomach issues were from the meds that they put me on ( blood thinners). Gerd was a constant issue. Pain in my neck, back knees ankles feet and stomach ( small intestines diverticulitis) so many things, headaches, then eye issues I thought came from a Tia. I’ve been diagnosed as autoimmune and scleritis in my eyes.
I was watching videos one day and saw 5 young adults talking about their disease called EDS. A light went off for me. I talked to my family Dr and he was so surprised I never complained about my dislocations in my joints. I’ve always just slipped them back in place all my life. He knew I had back pain, knew I had stomach issues. Knew my knees would swell up if I twisted it wrong doing chores, but I showed him my flexibility with my thumb to my wrist as a 60 year old it still moves that easily. He sent me to a geneticist and sure enough I’ve got a clear case of Hyper Elhers Danlos syndrome.
I’m in special therapy trying to build up core strength in my hips first but it surprises me all the time at how painful it is to do them. They’re simple but they HURT.
Almost 40 and finally diagnosed. Been chronically sick all my life. No dr has noticed this …..till my new doctor said I think you may have this. He said genetic testing would show it. He noticed things about me and asked questions no one else did. Since I was a child…..chronic gastrointestinal disorders all my life. Need digestive aides every meal. Nausea all my life. Vomited often as a child. Can’t eat large meals . Almost 39 and now diagnosed.
Benjamin is a lyrical poet, loved his words.
Thank you for creating these videos. I am looking for one to share with my family and friends so they know what it is and why it can be so debilitating
Hello, I’m 76. In the last 2 years I’ve discovered EDS, and finally my life has been put together. I was always called weird, picky, sensitive, and I’m sure there were those who thought I was a malingerer or had a mental problem. And still today I have not found a doctor willing to accept that I have something wrong with me. I may or may not have EDS, but why won’t physicians investigate?
I may have marfan or EDS. My muscle tone is low I have scoliosis, I have alot of scars. My neck is unstable. Sometimes I have problems with not really feeling my bladder. I'm 190cm. My fingers are long and thin.
Definitely see a doc. Usually the wait is forever to see the genetic/EDS docs, so seeing a rheumatologist that actually will see EDS (many won't), can help speed up the process of getting diagnosed and starting some form of helpful treatment. Then you can take the diagnosis to a primary care doc that understands what the heck EDS is, and they can refer you out to all the different types of specialists you will need for the various things that come up when your body acts ornery, and you can have some basic meds as needed for pain, spasms, sleep, digestion, anxiety, etc etc.
I appreciate the video but the words "rare condition" is what most people (drs) seem to remember. I think it is more rarely diagnosed. Hypermobility Spectrum Disorder is probably far more diagnosed than EDS...and should be mentioned.
I diagonis age 32. Very bad disease