What misconceptions have you heard? I think the worst I've heard is that hEDS simply doesn't exist or that it's a "trendy" disorder. Because it's so easy and fun to fake a systemic disorder 🙄
I like how you say "because it's so easy to fake a systemic disorder". I think they say this because they haven't even examined their patients and so can only disagree with the diagnosis as they can't say "I didn't bother examining the patient" 😂! This is unfortunately the case for many of us... Told there's nothing wrong and so it must be in our head, but no one bothered to examine the patient. Xxx
My Rheumatologist hit me with #12. He told me there was no point to getting an hEDS diagnosis because there was no cure. I asked him if he'd avoid diagnosing a diabetic because there is no cure. He glowered at me and checked the hEDS diagnosis in the computer!
What disturbing thing I have heard is that EDS doesn’t hurt, It DOES HURT and it hurts like hell! I have Classical EDS and oh my goodness it hurts like bloody heck, I definitely hurt when it is going to rain!!
@@ehlersdanlosandi whom ever thinks that I would love to challenge them to live in my body and any other EDSERS body, I bet they would change their minds and think before they speak!
hEDS appears to be linked to inflammation from mast cell activation in connective tissue from Mast cell disorders such as Mast Cell Activation Syndrome (MCAS), Hereditary alpha-tryptasemia syndrome (HαTS) and Mastocytosis. hEDS is very common among those with ME/CFS. A Swedish study of 234 ME/CFS patients meeting the Canadian Consensus Criteria found that 49% of patients had hypermobility and 20% met the criteria for hEDS.
Why is it that the rheumatologist put me down as having hypermobility, but not EDS? Im in such pain I've been referred to the chronic oain management team. And, should I press for a diagnosis?
@elibell19 That's a good question! Did the rheumatologist go through the diagnostic criteria with you, or just notice your hypermobility? If you haven't already, watch my "hEDS diagnostic criteria explained" video, and if you pass, I would personally push for a diagnosis. Not all rheumatologists are comfortable diagnosing hEDS, but they could help you get referred to someone who can.
Many healthcare professionals seem to think everyone with hEDS can touch their thumb to their arm, as if it was the only important part of the beighton score
Oh my gosh #12 all the way! People think I’m like at least 10-15 years younger than I actually am, and yet my body feels ancient. Super fun! One time I got carded (in my 30’s) and the lady just looked up at me shocked and said ‘no way?! That’s amazing!’ 😂
I'm 57 and get asked if I'm 35 all the time. People are shocked I have a kid that almost 40. My daughter is almost 27 and 12 year old boys are asking her out.
I was diagnosed with hEDS late last year. I've heard so many misconceptions, such as hypermobile EDS doesn't cause muscle pain (in fact muscles contract more due to instability and up to 75% of people with EDS also have dystonia). I've also had one doctor say to me prior to my official diagnosis that if I was hypermobile I would have the type that doesn't cause pain. This was so disrespectful. Not only to myself but the community I am now a part of as it was quite obvious that he was simply trying to cover his mistakes by stating that it would not cause pain. These myths are sometimes created by those who are ignorant of the condition and who are not up to date. I am so grateful however that I now have my diagnosis. It's a struggle though to have to keep going to appointments and having to keep advocating for yourself because of the myths going around. Keep up the good work spreading the word about hEDS! Thank you! Xxx
I developed disabling dystonia at 44. I also have hEDS, POTS, CCI & neuropathy (and likely MCAS, i'm on dupixent now and my lungs function way better). Now I'm 50...and I realize how lucky I was to have low pain for so many years. It's kicked in now and every joint hurts. We have to keep debunking myths, hEDS seems to be getting diagnosed more frequently now, so the myths will probably escalate. Hopefully with it becoming more recognized we'll get better management options!
The most common misconception I hear and the one that bothers me most is the idea that its either definitively rare or definitively common. Prevalence is unknown, and the study most often cited to "prove" its common had pretty poor methodology and is disputed by many experts in the condition. Even that tends to be misquoted as saying "hEDS impacts one in 500 people" when in reality, its conclusion was "1 in 500 people have ANY FORM of EDS or HSD" which is a substantially different claim. While of course, at current estimates, that would probably mean hEDS is more common than 1 in 2,000 people, one study with subpar methodology in one country is not enough for me to consider the claim that hEDS is common to be reliable. Not to mention, there's a philosophical question about whether EDS should be considered as a single disorder or multiple for the sake of calculating rare vs not. Personally, I'm not convinced that treating each subtype as a distinct disease would be beneficial to research or treatment (I think groups with similar symptoms and risk factors would be more effective), so I'm not convinced its useful to say "cEDS is rare but hEDS is not" because its not clear that is leading to meaningful differences in diagnosis and treatment, which should be the reason rare disease status matters.
What misconceptions have you heard? I think the worst I've heard is that hEDS simply doesn't exist or that it's a "trendy" disorder. Because it's so easy and fun to fake a systemic disorder 🙄
I like how you say "because it's so easy to fake a systemic disorder". I think they say this because they haven't even examined their patients and so can only disagree with the diagnosis as they can't say "I didn't bother examining the patient" 😂! This is unfortunately the case for many of us... Told there's nothing wrong and so it must be in our head, but no one bothered to examine the patient. Xxx
@@charlottestandage2765 Right?! I'm lucky that I've had mostly positive experiences in healthcare, but the bad ones sure stand out.
My Rheumatologist hit me with #12. He told me there was no point to getting an hEDS diagnosis because there was no cure. I asked him if he'd avoid diagnosing a diabetic because there is no cure. He glowered at me and checked the hEDS diagnosis in the computer!
What disturbing thing I have heard is that EDS doesn’t hurt, It DOES HURT and it hurts like hell! I have Classical EDS and oh my goodness it hurts like bloody heck, I definitely hurt when it is going to rain!!
I've heard that too, which I think is so strange since pain is literally part of the diagnostic criteria.
@@ehlersdanlosandi whom ever thinks that I would love to challenge them to live in my body and any other EDSERS body, I bet they would change their minds and think before they speak!
@@shannongreenwell1278 right?!
hEDS appears to be linked to inflammation from mast cell activation in connective tissue from Mast cell disorders such as Mast Cell Activation Syndrome (MCAS), Hereditary alpha-tryptasemia syndrome (HαTS) and Mastocytosis. hEDS is very common among those with ME/CFS. A Swedish study of 234 ME/CFS patients meeting the Canadian Consensus Criteria found that 49% of patients had hypermobility and 20% met the criteria for hEDS.
Still not sure hiw much ia the àspergers add causing the pain or the heds becauses autism causes spd and pain related ti fybromyalgia
I had a physical therapist tell me hEDS just means double jointed. No big deal
That's disappointing to hear, sorry that happened to you.
Why is it that the rheumatologist put me down as having hypermobility, but not EDS? Im in such pain I've been referred to the chronic oain management team.
And, should I press for a diagnosis?
@elibell19 That's a good question! Did the rheumatologist go through the diagnostic criteria with you, or just notice your hypermobility? If you haven't already, watch my "hEDS diagnostic criteria explained" video, and if you pass, I would personally push for a diagnosis. Not all rheumatologists are comfortable diagnosing hEDS, but they could help you get referred to someone who can.
Many healthcare professionals seem to think everyone with hEDS can touch their thumb to their arm, as if it was the only important part of the beighton score
Oh my gosh #12 all the way! People think I’m like at least 10-15 years younger than I actually am, and yet my body feels ancient. Super fun!
One time I got carded (in my 30’s) and the lady just looked up at me shocked and said ‘no way?! That’s amazing!’ 😂
I'm 57 and get asked if I'm 35 all the time. People are shocked I have a kid that almost 40. My daughter is almost 27 and 12 year old boys are asking her out.
I was diagnosed with hEDS late last year. I've heard so many misconceptions, such as hypermobile EDS doesn't cause muscle pain (in fact muscles contract more due to instability and up to 75% of people with EDS also have dystonia). I've also had one doctor say to me prior to my official diagnosis that if I was hypermobile I would have the type that doesn't cause pain. This was so disrespectful. Not only to myself but the community I am now a part of as it was quite obvious that he was simply trying to cover his mistakes by stating that it would not cause pain. These myths are sometimes created by those who are ignorant of the condition and who are not up to date. I am so grateful however that I now have my diagnosis. It's a struggle though to have to keep going to appointments and having to keep advocating for yourself because of the myths going around. Keep up the good work spreading the word about hEDS! Thank you! Xxx
I developed disabling dystonia at 44. I also have hEDS, POTS, CCI & neuropathy (and likely MCAS, i'm on dupixent now and my lungs function way better). Now I'm 50...and I realize how lucky I was to have low pain for so many years. It's kicked in now and every joint hurts. We have to keep debunking myths, hEDS seems to be getting diagnosed more frequently now, so the myths will probably escalate. Hopefully with it becoming more recognized we'll get better management options!
The most common misconception I hear and the one that bothers me most is the idea that its either definitively rare or definitively common. Prevalence is unknown, and the study most often cited to "prove" its common had pretty poor methodology and is disputed by many experts in the condition. Even that tends to be misquoted as saying "hEDS impacts one in 500 people" when in reality, its conclusion was "1 in 500 people have ANY FORM of EDS or HSD" which is a substantially different claim. While of course, at current estimates, that would probably mean hEDS is more common than 1 in 2,000 people, one study with subpar methodology in one country is not enough for me to consider the claim that hEDS is common to be reliable. Not to mention, there's a philosophical question about whether EDS should be considered as a single disorder or multiple for the sake of calculating rare vs not. Personally, I'm not convinced that treating each subtype as a distinct disease would be beneficial to research or treatment (I think groups with similar symptoms and risk factors would be more effective), so I'm not convinced its useful to say "cEDS is rare but hEDS is not" because its not clear that is leading to meaningful differences in diagnosis and treatment, which should be the reason rare disease status matters.
Thsnk you. This video was a greet help to me.
You're welcome!
Great video... thank you.
Thank you so much!
Hilarious, out of hundreds of médical practionners I've met ONE who had even Heard of it! No misconception....NO CONCEPTION !
Excellent!!!! Thank you❤
You're very welcome!