This is one of the BEST and most thorough explanations of what’s happening at the cellular level in the many different subtypes and how the presentation of symptoms is associated with the many places that breakdowns occur in our collagen and elastin production and processing. Wonderful. I learned so much!
Thank you for explaining this spectrum of disorders. I hope these studies find their way to GP's as well, since they are the ones at the gates to a succesful diagnose. It is really debilitating to meet so many drs that are clueless about this spectrum.
I have classical EDS type two. My sister and other family members have Osteogenesis Imperfecta especially my mom. Thanks a lot mommy! My dad is the culprit in my EDS , too. He is showing signs of hEDS. He is hyper mobile in his arms and other things.
I’m the carrier of EDS among other things that I passed onto my children. I had no clue I had EDS. I was just flexible. As life went on my world collapsed. I feel great guilt in passing this one to more than one of my children. One is at end of life. So please don’t blame your mom. I’m sure she never thought she’d gibe you or your siblings anything.
@@aspenenglish4976 I don’t truly blame her, she’s no longer with me anymore. I am so sorry that your child is passing! You’re in my thoughts, My heart goes out to you! I know my mom wouldn’t have wanted to pass anything on to me. My sister also has Osteogenesis and so does her oldest son. That’s just how life is. I don’t blame either one of my parents honestly.
@@shannongreenwell1278 thanks. I’m glad you don’t blame your mother. My daughter got the whole cluster of EDS and it’s comorbidities. She’s at end of life care and we don’t know how we will function without her. EDS is a difficult journey that most do not understand nor do they care to understand. I hope you’re doing well and have a good group of doctors and support.💕💕💕
@@aspenenglish4976 I do, my Neurologist was the one who diagnosed me with EDS, I unfortunately have Epilepsy also but I don’t think that’s a part of my EDS. I’m so sorry that this is happening to you and your family! I do have a good Women’s Health doctor and a good Eye Doctor and they both are familiar with EDS.
@@shannongreenwell1278 I have a seizure disorder too. My neurologist is fabulous and stays on top of everything with me and my strange body. I’m so happy you have a team of physicians that you trust and can help you through this journey. It’s is not easy. Thank you for your thoughtfulness and kindness. It’s much appreciated.😊😊😊
It's way past bedtime so I can't watch this now, but I saw the person looking sideways with their eye. I do that and if feels like a sprain. People think I'm bonkers when you talk about it. Myself and most of my cousins on my mum's side are hypermobile to some extent, but none of them do that.
This was fascinating to see. I'm currently waiting to be tested for EDS because while hEDS generally fits my symptoms, I was born with bilateral hip dysplasia and it's possible I have one of the other types. (Easy bruising, etc).
This is very important, we NEED some sort of test that has firm results instead of the checklists. The other types have the DNA testing, we do not for hypermobile type.
I have beleived that I have EDS for many years, but my Dr. won't screen me for it. They probably think I am a hypochondriac, because of my health issues and pain. I can still touch the floor with flat hands if I bend over with straight legs, but my knees and back have so much pain I can barely walk any more. Are there any good online resources to find local facilities for patients or does any one know of a good Dr in WI?
I would call around to local Dr. offices to see if a Dr. is familiar with Ehlers-Danlos and, if yes, you’d like to be evaluated. I was once able to do the splits all 3 ways without getting up and cheek on the floor, but body wide inflammation hinders my flexibility now. I went to a Dr that does physicals on Air Force pilots, and he missed it because of the inflammation, but he never checked my fingers for hyperextension. He retired, and the Dr. to whom he referred me caught it on the first visit. She is much younger than my former Dr. and a former pediatrician. She explained that hypermobility/ EDS is usually caught in childhood these days. I’m 46, they sure knew very little about it when I was a kid, and ALL the Dr.s I’ve had throughout my adult life missed it altogether. Actually had one Dr. that said, “What you could do 20 years ago has no bearing on what you can do now.” True for the majority, but aren’t there always exceptions to the rule? I had zero idea that my hyper flexibility actually signaled a greater health issue until just this past year. I hope this helps and I wish the best for you!
You don’t actually need to be able to currently do all the things on the Beighton score list. If you could EVER do them, it still counts. We stiffen and lose mobility as we age, especially as we develop arthritis and accumulate scar tissue. I was having the same problem, so finally, I printed out the 2017 EDS diagnostic criteria and went through the entire thing by myself at home, making notes on the papers of every box I checked off. I took it to my doctor and said, “I know this sounds nuts, and I know it’s rare, but I think this may potentially be the explanation for all my seemingly unrelated health problems. I noted every feature that I believe I possess.” She responded to it well and said she would do more research on EDS and get back to me. I got shuffled around to various doctors before FINALLY I got to one that asked if anyone had gone through the major and minor criteria with me, one by one. I said no, so he did it then and there. That’s when I got my diagnosis. Truth is, you don’t need a doctor that’s an expert in EDS, just one who is humble enough to admit they don’t know everything about it and is willing to go through the diagnostic criteria with you in person. It takes like 20 minutes and any GP can do it, if they’re willing to.
No, not until they can effectively go into every cell in your body and change the genetic DNA code to stop expressing collagen inappropriately. Until then, all we can do is manage the crappy symptoms as they pop up (when it is possible to even do so). We need to more aggressively diagnose who has this earlier on so that patients don't make decisions that they will regret that can hurt themselves or their children by passing on the genes. I know that if I would have known I had this I would have not gone into nursing for a degree as a hands on heavy lifting type career is very bad for EDS, and I also would not have had my son both because I carry defunct genes and also because it severely damaged my pelvic area and pelvic floor (at a minimum I would have known to ask for a c section and would have understood that I was a high risk and NOT a normal pregnancy).
@@jercasgav what a very out of view perspective, how can we know what the future holds, if we think we are gods and have some form of freedom? Who are you to say that your son will grow and become the person who will solve this problem?
@@snikrepak It's the most reasonable view to have. Why would I keep reproducing knowing my gene stock will corrupt everything I'm going to love, and watch physically die or suffer? We aren't gods. Nothing will make us gods. And thinking we can be saved from the birth of our damaged filth is damn near lunacy. If anything will save us it will be knowing that we'll no longer have to bare witness a life we never asked for with pain we couldn't remain sane with; death.
To handle this: Get muscular, have animal protein, and enjoy the ride.. the body is a vehicle, we just need to adjust the travel to it.. Besides, have rest, take some sun, eat as healthy as you can.. More important is to spread the knowledge, must doctors and school teachers dont know what they are looking at, they just see a clumpsy, lazy, hurtful child, without knowing what's behind. ..ah, you get better as you age.. but, keep the "musculation", have a good diet, have hormone replacement to avoid osteoporosis and degeneration of muscles... keep moving! That has worked for me, at 55 I feel very good. Not athletic, but keep a good muscular tone. Menopausia and EDS is not a good combo.. there is so much ignorance at both fields, that that make me feel in the dark ages. ❤
Impecable and compassionate presentation. If all our doctors were like that 🙏🏼
his manner of speaking is so calming.
This is one of the BEST and most thorough explanations of what’s happening at the cellular level in the many different subtypes and how the presentation of symptoms is associated with the many places that breakdowns occur in our collagen and elastin production and processing.
Wonderful. I learned so much!
Thank you for explaining this spectrum of disorders. I hope these studies find their way to GP's as well, since they are the ones at the gates to a succesful diagnose. It is really debilitating to meet so many drs that are clueless about this spectrum.
I have classical EDS type two. My sister and other family members have Osteogenesis Imperfecta especially my mom. Thanks a lot mommy! My dad is the culprit in my EDS , too. He is showing signs of hEDS. He is hyper mobile in his arms and other things.
I’m the carrier of EDS among other things that I passed onto my children. I had no clue I had EDS. I was just flexible. As life went on my world collapsed. I feel great guilt in passing this one to more than one of my children. One is at end of life. So please don’t blame your mom. I’m sure she never thought she’d gibe you or your siblings anything.
@@aspenenglish4976 I don’t truly blame her, she’s no longer with me anymore. I am so sorry that your child is passing! You’re in my thoughts, My heart goes out to you! I know my mom wouldn’t have wanted to pass anything on to me. My sister also has Osteogenesis and so does her oldest son. That’s just how life is. I don’t blame either one of my parents honestly.
@@shannongreenwell1278 thanks. I’m glad you don’t blame your mother. My daughter got the whole cluster of EDS and it’s comorbidities. She’s at end of life care and we don’t know how we will function without her. EDS is a difficult journey that most do not understand nor do they care to understand. I hope you’re doing well and have a good group of doctors and support.💕💕💕
@@aspenenglish4976 I do, my Neurologist was the one who diagnosed me with EDS, I unfortunately have Epilepsy also but I don’t think that’s a part of my EDS. I’m so sorry that this is happening to you and your family! I do have a good Women’s Health doctor and a good Eye Doctor and they both are familiar with EDS.
@@shannongreenwell1278 I have a seizure disorder too. My neurologist is fabulous and stays on top of everything with me and my strange body. I’m so happy you have a team of physicians that you trust and can help you through this journey. It’s is not easy. Thank you for your thoughtfulness and kindness. It’s much appreciated.😊😊😊
It's way past bedtime so I can't watch this now, but I saw the person looking sideways with their eye. I do that and if feels like a sprain. People think I'm bonkers when you talk about it. Myself and most of my cousins on my mum's side are hypermobile to some extent, but none of them do that.
This was fascinating to see. I'm currently waiting to be tested for EDS because while hEDS generally fits my symptoms, I was born with bilateral hip dysplasia and it's possible I have one of the other types. (Easy bruising, etc).
Fascinating! Thank you.
Very well presented.
Excellent presentation, where can we go for electron microscopy testing for EDS?
This is very important, we NEED some sort of test that has firm results instead of the checklists. The other types have the DNA testing, we do not for hypermobile type.
I have beleived that I have EDS for many years, but my Dr. won't screen me for it. They probably think I am a hypochondriac, because of my health issues and pain. I can still touch the floor with flat hands if I bend over with straight legs, but my knees and back have so much pain I can barely walk any more. Are there any good online resources to find local facilities for patients or does any one know of a good Dr in WI?
I would call around to local Dr. offices to see if a Dr. is familiar with Ehlers-Danlos and, if yes, you’d like to be evaluated. I was once able to do the splits all 3 ways without getting up and cheek on the floor, but body wide inflammation hinders my flexibility now. I went to a Dr that does physicals on Air Force pilots, and he missed it because of the inflammation, but he never checked my fingers for hyperextension. He retired, and the Dr. to whom he referred me caught it on the first visit. She is much younger than my former Dr. and a former pediatrician. She explained that hypermobility/ EDS is usually caught in childhood these days. I’m 46, they sure knew very little about it when I was a kid, and ALL the Dr.s I’ve had throughout my adult life missed it altogether. Actually had one Dr. that said, “What you could do 20 years ago has no bearing on what you can do now.” True for the majority, but aren’t there always exceptions to the rule?
I had zero idea that my hyper flexibility actually signaled a greater health issue until just this past year. I hope this helps and I wish the best for you!
I am in the same boat. I wish EDS was not only more well known, but also more willingness to test for it
You don’t actually need to be able to currently do all the things on the Beighton score list. If you could EVER do them, it still counts. We stiffen and lose mobility as we age, especially as we develop arthritis and accumulate scar tissue.
I was having the same problem, so finally, I printed out the 2017 EDS diagnostic criteria and went through the entire thing by myself at home, making notes on the papers of every box I checked off. I took it to my doctor and said, “I know this sounds nuts, and I know it’s rare, but I think this may potentially be the explanation for all my seemingly unrelated health problems. I noted every feature that I believe I possess.”
She responded to it well and said she would do more research on EDS and get back to me. I got shuffled around to various doctors before FINALLY I got to one that asked if anyone had gone through the major and minor criteria with me, one by one. I said no, so he did it then and there. That’s when I got my diagnosis.
Truth is, you don’t need a doctor that’s an expert in EDS, just one who is humble enough to admit they don’t know everything about it and is willing to go through the diagnostic criteria with you in person. It takes like 20 minutes and any GP can do it, if they’re willing to.
I’m pretty sure I have type 8.
Is there any solution to recover from this damm disease 😔
No, not until they can effectively go into every cell in your body and change the genetic DNA code to stop expressing collagen inappropriately. Until then, all we can do is manage the crappy symptoms as they pop up (when it is possible to even do so). We need to more aggressively diagnose who has this earlier on so that patients don't make decisions that they will regret that can hurt themselves or their children by passing on the genes. I know that if I would have known I had this I would have not gone into nursing for a degree as a hands on heavy lifting type career is very bad for EDS, and I also would not have had my son both because I carry defunct genes and also because it severely damaged my pelvic area and pelvic floor (at a minimum I would have known to ask for a c section and would have understood that I was a high risk and NOT a normal pregnancy).
@@jercasgav what a very out of view perspective, how can we know what the future holds, if we think we are gods and have some form of freedom? Who are you to say that your son will grow and become the person who will solve this problem?
It can only be managed, not cured. We can’t recover from this.
@@snikrepak It's the most reasonable view to have. Why would I keep reproducing knowing my gene stock will corrupt everything I'm going to love, and watch physically die or suffer? We aren't gods. Nothing will make us gods. And thinking we can be saved from the birth of our damaged filth is damn near lunacy. If anything will save us it will be knowing that we'll no longer have to bare witness a life we never asked for with pain we couldn't remain sane with; death.
To handle this: Get muscular, have animal protein, and enjoy the ride.. the body is a vehicle, we just need to adjust the travel to it..
Besides, have rest, take some sun, eat as healthy as you can..
More important is to spread the knowledge, must doctors and school teachers dont know what they are looking at, they just see a clumpsy, lazy, hurtful child, without knowing what's behind.
..ah, you get better as you age.. but, keep the "musculation", have a good diet, have hormone replacement to avoid osteoporosis and degeneration of muscles... keep moving!
That has worked for me, at 55 I feel very good. Not athletic, but keep a good muscular tone.
Menopausia and EDS is not a good combo.. there is so much ignorance at both fields, that that make me feel in the dark ages.
❤
Where can I see this doctor?
Canada