Thank you so much. I have recently been diagnosed with hEDS by my podiatrist. This explains a raft of conditions that I previously believed to be completely unrelated. Rheumatologists (I have RA,) have commented in the past, You know you're hyper mobile? But never bothered to elaborate on what the broader implications of that might be, beyond having loose joints. Thankyou for taking the time to explain it. Very interesting and it makes a lot of sense.
I literally have the same experience. Went to doctors ( including rheumatologist) with my dislocation problems and they told me I was hypermobile but never said that that could be the cause of my problems or even an illness. I’m trying to get diagnosed for hEDS at the moment because everything in the criteria fits me so well. Glad you already got diagnosed ✨
Omg same 😩 I literally went to a prof. Dr (!!!) who just straightened my elbow and said he doesn’t think I’m that hypermobile. Pretty sure he’d never really heard of hEDS or knew any of the other criteria ( and I do pass the beighton Score btw so his insight wasn’t even correct)
It appears I have been EDS hypermobile from birth and at 66 years of age have, at last received a diagnosis! Now begins a slow and growing understanding of why I seem to have disparate issues which , in fact are connected. I do feel for you, being in pain for the last 35 years is no joke and all I ever got was the the psycho-somatic diagnosis, or hysterical female. Glad I didn't give up. Glad you have a diagnosis and hope this leads to much understanding of your condition.
Thank you. As I said in a reply to one of your commentators below, it appears I have always been hypermobile but have coped with the deterioration of joints and damage through serious accidents which according to X-rays have healed but according to my nervous system are very much irritated and ongoing. I now go for the ultimate; convincing my doctor to give me a referral so I can get the support I need so as to end my life (I am already 67) with less pain and trauma and maybe return to some of the activities I have had to let go because they just hurt too much.
I have been misdiagnosed with functional neurological disorder & I know I have had hypermobility Ehlor's Danglos Syndrome, I have type one diabetes that I developed at 19 along with fibromyalgia, I have the evidence for hyperadrenegic POTS that started affecting my life at 12 & MCAS since birth, that is still undiagnosed. I have constant subluxations but I don't experience dislocations that I know of, maybe my hip, I can put hip joint back in myself, but need my hands. How do I find a rheumatologist who is willing to listen, now I've been diagnosed with a syndrome that everyone sees as mental? I have most the physical signs for heds, accept prolapse, hernia and heart valve issues & I have a Marfan ish body type. I now deal with severe right knee & both ankle instability & I'm unable to get the right attention I need in physio therapy due to inexperienced PT's in my area. Thank you for sharing this.
My auntie has heds, I'm waiting to see a specialist. After watching this I am worried because I have clubfoot too, can you have heds and another type at the same time?
If you have a look at the ehlers danlos society club foot is sometimes related to a more rare type of EDS. I was diagnosed with hEDS late last year at the hypermobility clinic by Dr. Mittal. All the doctors at the hypermobility clinic in London are fantastic! Hope you find answers.
@@charlottestandage2765 I saw a specialist in Salford he said I'm hypermobile but not eds because my skin isn't stretchy. I'm always going round in circles with them all. Just found out I've got 3 chronic fractures in my foot don't know how long for and I got sent to physio for hypermobility. The physio told me to stand on my tip toes I said I can't he said to try so I did and it really frickin hurt. Sick to death of it all I give up xx
@@JennyL.I I was initially told by the first NHS rheumatologist that I wasn't hypermobile. She looked away when I did some of the Beighton scale. I told her that my identical twin sister had been diagnosed with hEDS and she didn't believe me. So I printed out my sisters two diagnosis letters (one from professor Graham and the other from professor Mithias) and took these to the hypermobility clinic. The are absolutely brilliant there. I was diagnosed on the day with hEDS and I'm now having physio at the hypermobility clinic in London (chancery Lane physiotherapy). I would highly recommend the hypermobility clinic in London. I went thinking I wasn't even hypermobile to be told I scored 7/9. I'm not hypermobile in my pinky fingers. I saw Dr. Mittal. She's absolutely lovely and really cares. If you look up the hypermobility clinic in London and call them you can get an appointment within weeks. Please keep me updated. I would love to know how to get on whatever you decide to do. But I cannot recommend the hypermobility clinic highly enough. Best wishes. Xxx
Also, you don't have to necessarily have stretchy skin to meet the criteria for hEDS. Have a look at the diagnostic check list for hEDS. Also for hEDS the skin hyperextensibility is mild. I have been where you are and almost gave up on getting a diagnosis so I would hate to see someone else go through what I did. It can be very hard going through this alone. Also, if you don't quite meet the hEDS diagnostic criteria and are hypermobile and symptomatic you would most likely meet the criteria for hypermobile spectrum disorder. Best wishes. Xxx
Thank you so much. I have recently been diagnosed with hEDS by my podiatrist. This explains a raft of conditions that I previously believed to be completely unrelated. Rheumatologists (I have RA,) have commented in the past, You know you're hyper mobile? But never bothered to elaborate on what the broader implications of that might be, beyond having loose joints. Thankyou for taking the time to explain it. Very interesting and it makes a lot of sense.
I literally have the same experience. Went to doctors ( including rheumatologist) with my dislocation problems and they told me I was hypermobile but never said that that could be the cause of my problems or even an illness. I’m trying to get diagnosed for hEDS at the moment because everything in the criteria fits me so well. Glad you already got diagnosed ✨
Soon I know more about eds than 90% of the doctors I saw.. No diagnosis for 10 yrs
Omg same 😩 I literally went to a prof. Dr (!!!) who just straightened my elbow and said he doesn’t think I’m that hypermobile. Pretty sure he’d never really heard of hEDS or knew any of the other criteria ( and I do pass the beighton Score btw so his insight wasn’t even correct)
It appears I have been EDS hypermobile from birth and at 66 years of age have, at last received a diagnosis! Now begins a slow and growing understanding of why I seem to have disparate issues which , in fact are connected. I do feel for you, being in pain for the last 35 years is no joke and all I ever got was the the psycho-somatic diagnosis, or hysterical female. Glad I didn't give up. Glad you have a diagnosis and hope this leads to much understanding of your condition.
Thank you. As I said in a reply to one of your commentators below, it appears I have always been hypermobile but have coped with the deterioration of joints and damage through serious accidents which according to X-rays have healed but according to my nervous system are very much irritated and ongoing. I now go for the ultimate; convincing my doctor to give me a referral so I can get the support I need so as to end my life (I am already 67) with less pain and trauma and maybe return to some of the activities I have had to let go because they just hurt too much.
I have been misdiagnosed with functional neurological disorder & I know I have had hypermobility Ehlor's Danglos Syndrome, I have type one diabetes that I developed at 19 along with fibromyalgia, I have the evidence for hyperadrenegic POTS that started affecting my life at 12 & MCAS since birth, that is still undiagnosed. I have constant subluxations but I don't experience dislocations that I know of, maybe my hip, I can put hip joint back in myself, but need my hands. How do I find a rheumatologist who is willing to listen, now I've been diagnosed with a syndrome that everyone sees as mental? I have most the physical signs for heds, accept prolapse, hernia and heart valve issues & I have a Marfan ish body type. I now deal with severe right knee & both ankle instability & I'm unable to get the right attention I need in physio therapy due to inexperienced PT's in my area. Thank you for sharing this.
My auntie has heds, I'm waiting to see a specialist. After watching this I am worried because I have clubfoot too, can you have heds and another type at the same time?
If you have a look at the ehlers danlos society club foot is sometimes related to a more rare type of EDS. I was diagnosed with hEDS late last year at the hypermobility clinic by Dr. Mittal. All the doctors at the hypermobility clinic in London are fantastic! Hope you find answers.
@@charlottestandage2765 I saw a specialist in Salford he said I'm hypermobile but not eds because my skin isn't stretchy. I'm always going round in circles with them all. Just found out I've got 3 chronic fractures in my foot don't know how long for and I got sent to physio for hypermobility. The physio told me to stand on my tip toes I said I can't he said to try so I did and it really frickin hurt. Sick to death of it all I give up xx
@@JennyL.I I was initially told by the first NHS rheumatologist that I wasn't hypermobile. She looked away when I did some of the Beighton scale. I told her that my identical twin sister had been diagnosed with hEDS and she didn't believe me. So I printed out my sisters two diagnosis letters (one from professor Graham and the other from professor Mithias) and took these to the hypermobility clinic. The are absolutely brilliant there. I was diagnosed on the day with hEDS and I'm now having physio at the hypermobility clinic in London (chancery Lane physiotherapy). I would highly recommend the hypermobility clinic in London. I went thinking I wasn't even hypermobile to be told I scored 7/9. I'm not hypermobile in my pinky fingers. I saw Dr. Mittal. She's absolutely lovely and really cares. If you look up the hypermobility clinic in London and call them you can get an appointment within weeks. Please keep me updated. I would love to know how to get on whatever you decide to do. But I cannot recommend the hypermobility clinic highly enough. Best wishes. Xxx
Also, you don't have to necessarily have stretchy skin to meet the criteria for hEDS. Have a look at the diagnostic check list for hEDS. Also for hEDS the skin hyperextensibility is mild. I have been where you are and almost gave up on getting a diagnosis so I would hate to see someone else go through what I did. It can be very hard going through this alone. Also, if you don't quite meet the hEDS diagnostic criteria and are hypermobile and symptomatic you would most likely meet the criteria for hypermobile spectrum disorder. Best wishes. Xxx
COLLABORATION
IS KEEEEY
in this Relation-shit