A realization they causes me concern and sorrows is the assumption so often is that “non verbal” can be due to a lack of intellect or neurological when an underlying condition such as hyper-mobility, connective tissue, mast cell disorders can lead to vocal muscle and nerve abnormalities that are not identified contributing to the inability to speak. This needs to be raised in awareness and research and diagnostics .
This was eye-opening, if not jaw dropping. Re: the connective tissue issues, the growing pains that I never seemed to grow out of, the braces/crutches/ace bandages/rollators/etc and so many other physical "supports" that kept me standing/walking/sitting/moving/dancing/skipping (though rarely running) that constantly flowed in and out of my life from a young age through teenage through Mama age and now through old age for various joint stabilization, pain relief, and omg all the hot and sometimes oven-burned towels my own Mama wrapped around my legs at night to help calm and quiet my screaming pain for years and years when little until 6th grade... and oh so many other things y'all mentioned that totally apply to my own unique but obviously connected experiences. My ASD diagnosis completely validated my brain and how it works but has never adequately explained or connected all my sensory integration and pain-pain-pain-painful "challenges," lol. Oooooh my goodness, what a bright new light you gals have been shining on my mind, memories, body and soul today. Way cool and very helpful, indeed!
Check out the Ehlers Danlos Society website and YT channel. There are other connective tissue disorders if non of the 13 types of EDS fit you. But be aware that most folks like myself who are above 50, literally had to insist that I get diagnosed...but in my area in US...there is exactly 1 EDS/HSD knowledgeable dr in a 500 mile radius which is the capital city of my state. For most everyone this person is out of network for the insurance. In my case, my dr requested an out of network appt for diagnosis and once that was approved, the dr had a year waitlist. By the time I saw the dr, we had to request a new out-of-network approval because the referral expired about 11 months after it was issued. Others have mentioned catching a 2 year waitlist for the dr.)
Hi from the U S. Thanks, this video validates what my daughter and I go through daily. Bad weather makes it worst, I think the Geometric pressure. Change of seasons. Its even worst if your vagus nerve is weak or damaged.
I have suspected EDS for some time now, even more since being diagnosed with ADHD and ASD. At this point my medical file would read more like a record of medical mistreatment, misdiagnosis and medical negligence rather than an actual medical record.
@1:11:53 growing pains... in the late 1960s St Joseph Children's Aspirin was marketed and our family doctor Dr Nina Kodres (German doctor) prescribed it for rheumatism of the knees and shins (our legs). NSAIDS are now known to cause the acceleration of cartilage degeneration. Imagine that.
When my son was born in the 1990s, the doctors recommended that I alternate between the childrens Acetaminophen and the childrens Motrin (NSAID). Later on in life my son has cartilage joint instability.
9:50 "Muscle tone" is not fixed. It happens acutely with movement and chronically with posture. Reciprocal inhibition dictates this, and postural correction proves it. I meet every marker for HEDS & autism, and I'm speaking from personal experience. So if not muscle tone, what do we call the resting tension ratio between opposing muscle groups? Also why is nobody looking at physical therapy to alleviate SO many symptoms? I'm still new to this, but aren't POTS and thyroid dysfunction common coexisting issues with HEDS? Adjusting forward head posture (kyphosis) directly affects the pressure on the thyroid and carotid baroreceptors right? It all makes sense why my hyperfixation for 30 years has been musculoskeletal function and joint rehabilitation 😅 also, autonomic dysfunction can be addressed through physicality. The general fitness industry does need better education, but we should remain open minded to physicality as substantial symptom and injury mitigation 🙏
To clarify, not sure if ligament "tone" is a thing as they're not attached to muscles. Muscles only change length, but the resting length is malleable through conditioning. This changes the tension or "tone" of the tendon, and affects joint stability.
The name "Asperger’s" is not used much anymore. The term used today is "Autism Spectrum Disorder". Asperger was closely associated with the Nazi regime. Thanks for not using the old name in the future!
Dangerous incorrect information: thumb to wrist is forward, not backward. Pinky is backward 90 degrees, thumb to wrist is forward. Please educate yourself. Apparently a few people can bend their thumb back that far, but nobody should try because it is harmful. Also emotionally harmful to people when medical professionals don't know the criteria correctly and test them improperly, possibly ending up in a negative diagnosis and gaslighting. Also, 4 is hypermobile/EDS for older people, or 3 if qualifying based on alternative test. Also, the criteria keeps changing so you have to continue to update your knowledge.
What complications from anesthesia? I'm trying to figure out if eds could explain why I had trouble breathing after surgery. I also had a really hard time waking up. Thank you for this presentation!
Eds can stop local anaesthesia from working (numbing) and also general Anaesthesia from working. Can take more of it to knock someone out. Trouble breathing can be common hence why you have an oxygen mask. Also people react differently and can be really sleepy. I on the otherhand am alert like a cat waking up! 😂 I always shock the nurses with how alert I am after anaesthesia 😂
I also have a connective tissue disorder called Buschke-Ollendorff Syndrome with dermatofibrosis lenticularis. How might that interact with hEDS collagen divergence?
A realization they causes me concern and sorrows is the assumption so often is that “non verbal” can be due to a lack of intellect or neurological when an underlying condition such as hyper-mobility, connective tissue, mast cell disorders can lead to vocal muscle and nerve abnormalities that are not identified contributing to the inability to speak. This needs to be raised in awareness and research and diagnostics .
This was eye-opening, if not jaw dropping. Re: the connective tissue issues, the growing pains that I never seemed to grow out of, the braces/crutches/ace bandages/rollators/etc and so many other physical "supports" that kept me standing/walking/sitting/moving/dancing/skipping (though rarely running) that constantly flowed in and out of my life from a young age through teenage through Mama age and now through old age for various joint stabilization, pain relief, and omg all the hot and sometimes oven-burned towels my own Mama wrapped around my legs at night to help calm and quiet my screaming pain for years and years when little until 6th grade... and oh so many other things y'all mentioned that totally apply to my own unique but obviously connected experiences. My ASD diagnosis completely validated my brain and how it works but has never adequately explained or connected all my sensory integration and pain-pain-pain-painful "challenges," lol. Oooooh my goodness, what a bright new light you gals have been shining on my mind, memories, body and soul today. Way cool and very helpful, indeed!
Check out the Ehlers Danlos Society website and YT channel. There are other connective tissue disorders if non of the 13 types of EDS fit you. But be aware that most folks like myself who are above 50, literally had to insist that I get diagnosed...but in my area in US...there is exactly 1 EDS/HSD knowledgeable dr in a 500 mile radius which is the capital city of my state. For most everyone this person is out of network for the insurance. In my case, my dr requested an out of network appt for diagnosis and once that was approved, the dr had a year waitlist. By the time I saw the dr, we had to request a new out-of-network approval because the referral expired about 11 months after it was issued. Others have mentioned catching a 2 year waitlist for the dr.)
Hi from the U S. Thanks, this video validates what my daughter and I go through daily. Bad weather makes it worst, I think the Geometric pressure. Change of seasons. Its even worst if your vagus nerve is weak or damaged.
I have suspected EDS for some time now, even more since being diagnosed with ADHD and ASD. At this point my medical file would read more like a record of medical mistreatment, misdiagnosis and medical negligence rather than an actual medical record.
@1:11:53 growing pains... in the late 1960s St Joseph Children's Aspirin was marketed and our family doctor Dr Nina Kodres (German doctor) prescribed it for rheumatism of the knees and shins (our legs). NSAIDS are now known to cause the acceleration of cartilage degeneration. Imagine that.
what. WHAT. WHAT!??!?? WHAT!???!?
if you could please link a source
@@nickm8179it is because to the.pàtient.keeps.going.with medication
Yeah, link source. What I'm finding says aspirin improves tissue remodeling.
Anthropologist Nina Jablonski says sunlight degrades cartilage.
When my son was born in the 1990s, the doctors recommended that I alternate between the childrens Acetaminophen and the childrens Motrin (NSAID). Later on in life my son has cartilage joint instability.
thank you!!!
Medical cannabis privately is the ONLY thing that has helped the pain. But its short lived.
Check your EHR and get anything wrong corrected.
9:50 "Muscle tone" is not fixed. It happens acutely with movement and chronically with posture. Reciprocal inhibition dictates this, and postural correction proves it. I meet every marker for HEDS & autism, and I'm speaking from personal experience. So if not muscle tone, what do we call the resting tension ratio between opposing muscle groups? Also why is nobody looking at physical therapy to alleviate SO many symptoms? I'm still new to this, but aren't POTS and thyroid dysfunction common coexisting issues with HEDS? Adjusting forward head posture (kyphosis) directly affects the pressure on the thyroid and carotid baroreceptors right? It all makes sense why my hyperfixation for 30 years has been musculoskeletal function and joint rehabilitation 😅 also, autonomic dysfunction can be addressed through physicality. The general fitness industry does need better education, but we should remain open minded to physicality as substantial symptom and injury mitigation 🙏
To clarify, not sure if ligament "tone" is a thing as they're not attached to muscles. Muscles only change length, but the resting length is malleable through conditioning. This changes the tension or "tone" of the tendon, and affects joint stability.
Central sensitisation part of Asperger's
The name "Asperger’s" is not used much anymore. The term used today is "Autism Spectrum Disorder". Asperger was closely associated with the Nazi regime. Thanks for not using the old name in the future!
@@conniegarviesome still use it IDE rather use it to identify Hugh functioning for myself but not to offend
Dangerous incorrect information: thumb to wrist is forward, not backward. Pinky is backward 90 degrees, thumb to wrist is forward. Please educate yourself. Apparently a few people can bend their thumb back that far, but nobody should try because it is harmful. Also emotionally harmful to people when medical professionals don't know the criteria correctly and test them improperly, possibly ending up in a negative diagnosis and gaslighting.
Also, 4 is hypermobile/EDS for older people, or 3 if qualifying based on alternative test.
Also, the criteria keeps changing so you have to continue to update your knowledge.
Could it be something else besides autism? Could it be weak ligaments making facial expression and speaking more difficult?
Great content I really enjoyed this , well done guys!
What complications from anesthesia? I'm trying to figure out if eds could explain why I had trouble breathing after surgery. I also had a really hard time waking up. Thank you for this presentation!
Eds can stop local anaesthesia from working (numbing) and also general Anaesthesia from working. Can take more of it to knock someone out. Trouble breathing can be common hence why you have an oxygen mask. Also people react differently and can be really sleepy. I on the otherhand am alert like a cat waking up! 😂 I always shock the nurses with how alert I am after anaesthesia 😂
Anesthesia can go both ways in EDS. Some people need more and others are hypersensitive.
I also have a connective tissue disorder called Buschke-Ollendorff Syndrome with dermatofibrosis lenticularis. How might that interact with hEDS collagen divergence?
The migraine s what are transformed type