Regarding the Beighton score and how it is not a tell all. I can't touch my thumb to my wrist in the downward direction they say but I can touch my thumb to my wrist the opposite way, the above direction. Even others with Hypermobile Ehlers-Danlos Syndrome can rarely do that. So, I agree, there needs to be a different determination. Also, I feel very strongly that checking children for hypermobility should be as important as checking eyesight and hearing. Just showing how little the highly respected physical therapists at Stretch to Win know about Ehlers-Danlos Syndrome let alone pediatricians, in comparison with the commonality statistics of (1:100, 1:30, 20%) shows how urgent this subject is. Also, the statistics regarding race are very important. Much higher in dark skinned individuals, from middle eastern to african. Most of the information tends to make one think the opposite...that it's more common in fair skinned individuals. Thank you for covering this very important subject.
I’m learning about this right now because my autistic teenage son is falling asleep at school and has always been prone to fatigue. This explained my pain, IBS, fatigue, etc. Four of my five sons scored 5 or higher on the Beighton score.
I was diagnosed about a year ago after my nephew was diagnosed and I looked at the list of symptoms and basically everything clicked. You are blowing my mind though as things like the stretch marks I had at age 12 were explained. Unfortunately, I have had 3 injuries from accidents that they had decided my natural flexibility led to greater injury, but I took like 3 times longer to recover from them than "normal" people. My last accident was from a drunk driver hitting me when I was standing outside my car in the middle of the day and my head was thrown against the side roof of my car, giving me a TBI and a vestibular disorder. That was 11 years ago, but I have twice done little things that gave me another concussion, which mystified me, but you're explanation that we have looser connective tissue in the brain so it more easily gets sloshed/banged around explains it. On the topic of "do you stretch someone with hypermobility or EDS?", I was back in PT for about 2 months 1.5 years ago as I badly tripped and jarred my low back and set my spinal stenosis and other low back/hip issues gravely off. I didn't know that I had EDS yet but they saw that I was Uber flexible. But what can be maddening for a PATIENT in such a typical PT situation is that they tell the insurance company that they are going to work to return the patient to "normal" range of motion. But the problem for a hypermobile individual is that you are used to functioning and existing with a much greater range of motion than "normal" people and, at least for me, your body badly hurts if you DON'T restore it to a range/ability where you can regularly stretch to the degree where you have much less pain. But when you achieve the "regular" range of motion, your PT wants to discharge you because the insurance company will no longer PAY for them to work with the patient to return them to THEIR normal functioning. (I guess unless you are a Michael Phelps, they aren't going to help a typical hypermobile individual return to how they are used to existing because "normal" is fine for them, even if stopping at that spot in recovery creates greater pain, less quality of life, and greater limitations for the hypermobile individual). I don't know if specialists treating hypermobile and EDS persons can plead the case to insurance companies to restore patients to THEIR normal in PT and not just what is typical within a population.
Board certified physiatrists (rehab docs) are the experts in addressing trigger points, regenerative medicine, and more. THEY would be more likely to be specialists in living with hypermobility. Which is what every hypermobile child I have ever treated gets their rehab therapy referrals from.
I've never been officially diagnosed as having hEDS. Recently someone who has EDS with POTS and a number of other disorders asked me if I have EDS because she noticed how I was standing. She also asked if I can touch the floor with my palms. Yes, of course, and I can do the splits in all directions, even at my age. I've never heard of EDS before, but I have so many other conditions I had no idea were related to me being flexible. As a child I would sit with my legs in a W. I have had stretch marks since I was about 12. My fingers hyper extend when I hold a pencil. My wingspan is about 3.5" longer than my height. I can easily put my fingers around my wrist (and forearms). Heck, I can put my hands on my waist and touch my fingertips behind my back. I have Raynauds and am sensitive to cold. I have big eyes and overcrowded teeth. One more thing I haven't heard as much is that I'm sensitive to acetominaphin. So, despite never hearing of this before I'd say there is strong evidence that says I've probably got this, and I've been freaking out a little bit. The person who originally asked me if I have EDS talked about joints coming out, organs moving around, skin not healing fast. I've got occasional joint pain, like right now because I was dancing and jumping for a few hours the other day, but I've never had anything come out of socket that I'm aware I've. I'm not clumsy. I don't faint, though I do get light headed at times when lifting weights. What I appreciate hearing here is about Michael Phelps and this can be a super power. I am a fast swimmer- not Michael Phelps fast, but I enjoy swimming laps. This doesn't have to be something to be afraid of.
You may have incredible hyper mobile joints , tissue but missed the ‘syndrome ‘ you lucky thing I have come so close to fainting when 12 - 27 ballet studio doing multiple sets turns to left I overheat . I sweat as much as Rafa Tennis player Hundred more weird symptoms Nausea queen Anxiety is my worst symptom Best wishes these two know their stuff I can say that as I know too many that do not except my physio who was in ballet company who is himself .
![Seungmin "그렇게, 천천히, 우리(As we are)" | [Stray Kids : SKZ-PLAYER]](http://i.ytimg.com/vi/kAzmhLHePqU/mqdefault.jpg)
Regarding the Beighton score and how it is not a tell all. I can't touch my thumb to my wrist in the downward direction they say but I can touch my thumb to my wrist the opposite way, the above direction. Even others with Hypermobile Ehlers-Danlos Syndrome can rarely do that. So, I agree, there needs to be a different determination. Also, I feel very strongly that checking children for hypermobility should be as important as checking eyesight and hearing. Just showing how little the highly respected physical therapists at Stretch to Win know about Ehlers-Danlos Syndrome let alone pediatricians, in comparison with the commonality statistics of (1:100, 1:30, 20%) shows how urgent this subject is. Also, the statistics regarding race are very important. Much higher in dark skinned individuals, from middle eastern to african. Most of the information tends to make one think the opposite...that it's more common in fair skinned individuals. Thank you for covering this very important subject.
Great interview. Very informative. Thankyou both.
I’m learning about this right now because my autistic teenage son is falling asleep at school and has always been prone to fatigue. This explained my pain, IBS, fatigue, etc. Four of my five sons scored 5 or higher on the Beighton score.
Great interview, Dr. Frederick and Dr. Hartman. Thank you!
Thank you Chris for sharing this great interview with Dr. Harman, super valuable information about hypermobility spectrum disorder!
Thanks for watching Gil & I'm looking forward to your webinar tomorrow on "Understanding Hypermobility"!
I was diagnosed about a year ago after my nephew was diagnosed and I looked at the list of symptoms and basically everything clicked. You are blowing my mind though as things like the stretch marks I had at age 12 were explained. Unfortunately, I have had 3 injuries from accidents that they had decided my natural flexibility led to greater injury, but I took like 3 times longer to recover from them than "normal" people. My last accident was from a drunk driver hitting me when I was standing outside my car in the middle of the day and my head was thrown against the side roof of my car, giving me a TBI and a vestibular disorder. That was 11 years ago, but I have twice done little things that gave me another concussion, which mystified me, but you're explanation that we have looser connective tissue in the brain so it more easily gets sloshed/banged around explains it.
On the topic of "do you stretch someone with hypermobility or EDS?", I was back in PT for about 2 months 1.5 years ago as I badly tripped and jarred my low back and set my spinal stenosis and other low back/hip issues gravely off. I didn't know that I had EDS yet but they saw that I was Uber flexible. But what can be maddening for a PATIENT in such a typical PT situation is that they tell the insurance company that they are going to work to return the patient to "normal" range of motion. But the problem for a hypermobile individual is that you are used to functioning and existing with a much greater range of motion than "normal" people and, at least for me, your body badly hurts if you DON'T restore it to a range/ability where you can regularly stretch to the degree where you have much less pain. But when you achieve the "regular" range of motion, your PT wants to discharge you because the insurance company will no longer PAY for them to work with the patient to return them to THEIR normal functioning. (I guess unless you are a Michael Phelps, they aren't going to help a typical hypermobile individual return to how they are used to existing because "normal" is fine for them, even if stopping at that spot in recovery creates greater pain, less quality of life, and greater limitations for the hypermobile individual).
I don't know if specialists treating hypermobile and EDS persons can plead the case to insurance companies to restore patients to THEIR normal in PT and not just what is typical within a population.
Board certified physiatrists (rehab docs) are the experts in addressing trigger points, regenerative medicine, and more. THEY would be more likely to be specialists in living with hypermobility. Which is what every hypermobile child I have ever treated gets their rehab therapy referrals from.
I've never been officially diagnosed as having hEDS. Recently someone who has EDS with POTS and a number of other disorders asked me if I have EDS because she noticed how I was standing. She also asked if I can touch the floor with my palms. Yes, of course, and I can do the splits in all directions, even at my age. I've never heard of EDS before, but I have so many other conditions I had no idea were related to me being flexible. As a child I would sit with my legs in a W. I have had stretch marks since I was about 12. My fingers hyper extend when I hold a pencil. My wingspan is about 3.5" longer than my height. I can easily put my fingers around my wrist (and forearms). Heck, I can put my hands on my waist and touch my fingertips behind my back. I have Raynauds and am sensitive to cold. I have big eyes and overcrowded teeth. One more thing I haven't heard as much is that I'm sensitive to acetominaphin.
So, despite never hearing of this before I'd say there is strong evidence that says I've probably got this, and I've been freaking out a little bit. The person who originally asked me if I have EDS talked about joints coming out, organs moving around, skin not healing fast. I've got occasional joint pain, like right now because I was dancing and jumping for a few hours the other day, but I've never had anything come out of socket that I'm aware I've. I'm not clumsy. I don't faint, though I do get light headed at times when lifting weights.
What I appreciate hearing here is about Michael Phelps and this can be a super power. I am a fast swimmer- not Michael Phelps fast, but I enjoy swimming laps. This doesn't have to be something to be afraid of.
I loved sitting in a W as a preschooler too but, I was taught to sit on my legs instead. I was diagnosed ADHD as an adult.
You may have incredible hyper mobile joints , tissue but missed the ‘syndrome ‘ you lucky thing
I have come so close to fainting when 12 - 27 ballet studio doing multiple sets turns to left
I overheat . I sweat as much as Rafa
Tennis player
Hundred more weird symptoms
Nausea queen
Anxiety is my worst symptom
Best wishes these two know their stuff
I can say that as I know too many that do not except my physio who was in ballet company who is himself
.
my twins both got a ton of stretch marks when they were 9 yo. Both thin girls.