I can't thank you enough for all your doing! It took me over 30 years to finally get diagnosed with hEDS. My identical twin sister was diagnosed with hEDS in 2014 and I was diagnosed late last year. But doctors either don't understand the condition or don't believe in it. It's so validating to know that you have found at least one gene that causes hEDS and I suspect there will be multiple genes. Thank you so much for all your hard work for our community! Xxx
Thanks SO MUCH! Any update’s are appreciated as it’s saying on googling that it’s MIA3 gene variants/mutations that may cause hEDS and as You explained so many of us are hanging on the edge of the seat for the study to progress. Hot prayers for all interns, Who go on to achieve great things for the community. ❤
We are interested because we are suffering with multiple often life threatening symptoms that many medical professionals dismiss. Our bodies don’t work like non EDS bodies. My father has had an aortic dissection, I have mitral valve prolapse, CCI, POTS, MCAS, chronic pain, dislocations and subluxations. Yet my life has been marred by medicinal trauma and being denied, dismissed, abused and collecting iatrogenic injuries such as severe peripheral neuropathy. Thank you for doing what you are doing. Thank you.
The pain is intense for me, it's constant, making it very hard to live a normal life without palliative care. That's why we with this condition are so interested, as well.
I was symptomatic enough such that an EDS-educated physician could have identified me for forty years, before *I* figured it out, and genuine EDS experts agreed it was obvious in retrospect.
I have MCAS POTS hEDS and adrenal insufficiency due to hypopituitarism and I’m curious as to how the adrenal glands play a role in hEDS! Great video looking forward to more information resources and research from you guys thanks so much!
Excellent video! Thank you for the information. I find this stuff fascinating. I was just diagnosed with EDS in December and I suspect its hEDS as I have MCAS too (my symptoms match MCAS so now I am trying to get that diagnosed). Do I need to see a geneticist to know which type of EDS I have? I am not sure what the neurologist put in my file. I have autism too. I never would have expected something with the adrenal gland. And as for getting it diagnosed, I actually had to tell my PCP I thought I had EDS as she wanted to solve my issues by sending me to a shrink. Yes I have anxiety but that is not the cause of my gut problems or my airborne reactions or reacting to chemicals, etc. Doctors really need to learn about these genetic mutations. But my PCP did listen to me so I think things will go smoother now.
@@LadyPashta Dr Theohardides is a well known mast cell and autism expert that has spoke at Ehlers Danlos seminars. He states that autism is brain inflammation that can be caused by mast cells.
@@darilekron4590 Autism can be caused by many things. hEDS is NOT linked to autism AT ALL. You just said MCAS, which is NOT hEDS. Being linked to hEDS does not make it the same. That kind of "logic" would link everything in the world with everything else.
Are your numbers only US or is it worldwide? That would matter a lot in figuring out if autism rates were higher in those with EDS or not. Right now the CDC says 2.21% of US adults have an ASD diagnosis.
I can't thank you enough for all your doing! It took me over 30 years to finally get diagnosed with hEDS. My identical twin sister was diagnosed with hEDS in 2014 and I was diagnosed late last year. But doctors either don't understand the condition or don't believe in it. It's so validating to know that you have found at least one gene that causes hEDS and I suspect there will be multiple genes. Thank you so much for all your hard work for our community! Xxx
Thanks SO MUCH!
Any update’s are appreciated as it’s saying on googling that it’s MIA3 gene variants/mutations that may cause hEDS and as You explained so many of us are hanging on the edge of the seat for the study to progress.
Hot prayers for all interns, Who go on to achieve great things for the community.
❤
We are interested because we are suffering with multiple often life threatening symptoms that many medical professionals dismiss. Our bodies don’t work like non EDS bodies. My father has had an aortic dissection, I have mitral valve prolapse, CCI, POTS, MCAS, chronic pain, dislocations and subluxations. Yet my life has been marred by medicinal trauma and being denied, dismissed, abused and collecting iatrogenic injuries such as severe peripheral neuropathy. Thank you for doing what you are doing. Thank you.
The pain is intense for me, it's constant, making it very hard to live a normal life without palliative care. That's why we with this condition are so interested, as well.
I was symptomatic enough such that an EDS-educated physician could have identified me for forty years, before *I* figured it out, and genuine EDS experts agreed it was obvious in retrospect.
I have MCAS POTS hEDS and adrenal insufficiency due to hypopituitarism and I’m curious as to how the adrenal glands play a role in hEDS! Great video looking forward to more information resources and research from you guys thanks so much!
Excellent video! Thank you for the information. I find this stuff fascinating. I was just diagnosed with EDS in December and I suspect its hEDS as I have MCAS too (my symptoms match MCAS so now I am trying to get that diagnosed). Do I need to see a geneticist to know which type of EDS I have? I am not sure what the neurologist put in my file. I have autism too. I never would have expected something with the adrenal gland. And as for getting it diagnosed, I actually had to tell my PCP I thought I had EDS as she wanted to solve my issues by sending me to a shrink. Yes I have anxiety but that is not the cause of my gut problems or my airborne reactions or reacting to chemicals, etc. Doctors really need to learn about these genetic mutations. But my PCP did listen to me so I think things will go smoother now.
Very interesting! I look forward to seeing the paper in Nature.
Autism and asperger's can be associated with syrinx ? Because I have both.
I don't think eds and autism are related from what I have seen.
@@LadyPashta
Dr Theohardides is a well known mast cell and autism expert that has spoke at Ehlers Danlos seminars. He states that autism is brain inflammation that can be caused by mast cells.
@@darilekron4590 Autism can be caused by many things. hEDS is NOT linked to autism AT ALL. You just said MCAS, which is NOT hEDS. Being linked to hEDS does not make it the same. That kind of "logic" would link everything in the world with everything else.
Are your numbers only US or is it worldwide? That would matter a lot in figuring out if autism rates were higher in those with EDS or not. Right now the CDC says 2.21% of US adults have an ASD diagnosis.