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Discovery of heds gene. Any relevance to m.e.?
- Thread starter Oliver3
- Start date
Zebra
Senior Member
- Messages
- 866
- Location
- Northern California
Hi, @Oliver3
I remember reading this article in 2021 and being really excited about it.
However, it's now 2023 and I have not seen such a test for hEDS become commercially available at the clinic level for both patients and doctors.
Do you know differently? Fingers crossed!
I remember reading this article in 2021 and being really excited about it.
However, it's now 2023 and I have not seen such a test for hEDS become commercially available at the clinic level for both patients and doctors.
Do you know differently? Fingers crossed!
Odd, as I write this I can remember when EDS was put in with SM, ACM and other illnesses. We all wondered what in heaven's name it had that was a link.
So they're hard at work doing good research for this illness and yes, perhaps, one day it will filter down to us. I do know many people with EDS (from past forums) and stay in contact with some.
One is a family of 5, all of whom have EDS. Usually there is a similarity in their looks, but one girl that I befriended when she was very young, had 3 children and went on to university and is now working full time. She never complains about any pain....she's just a go-getter and needed some encouragement. Nothing could be done for EDS for many, many years. I hope she maintains her status quo.
I also know a family of all boys who have this problem. It didn't seem to show its darker side until they were about 40 or so.
I wish this group well and it certainly draws attention to a cause when a Miss America has it (although I didn't know anything about it). Imagine having to sit around with those silly crows perched on your head? One can only hope the EDS doesn't affect their posture. Yours, Lenora
So they're hard at work doing good research for this illness and yes, perhaps, one day it will filter down to us. I do know many people with EDS (from past forums) and stay in contact with some.
One is a family of 5, all of whom have EDS. Usually there is a similarity in their looks, but one girl that I befriended when she was very young, had 3 children and went on to university and is now working full time. She never complains about any pain....she's just a go-getter and needed some encouragement. Nothing could be done for EDS for many, many years. I hope she maintains her status quo.
I also know a family of all boys who have this problem. It didn't seem to show its darker side until they were about 40 or so.
I wish this group well and it certainly draws attention to a cause when a Miss America has it (although I didn't know anything about it). Imagine having to sit around with those silly crows perched on your head? One can only hope the EDS doesn't affect their posture. Yours, Lenora
I have some female family members with it, but I was only 'slow to heal' after injuries - always requiring lots of rest, careful PT, etc.
Until after 40, slow to heal turned into zero healing no matter how much PT or rest or whatever. My last minor injuries basically just 'spread' until I lost the ability to walk or stand. Picking up a pot sometimes pulls a muscle for me now, so I have to be infinitely careful.