--- In ehlersdanlossupportclub@yahoogroups.com, "kirafae1986"
<kirafae1986@y...> wrote:
>
> Hello I am new to this group. I have type 3 hyper extensive ehlers
> danlos. I also have chiari malformation. I'm curious if anyone
else
> has had this double up and what sort of complications it has
caused.
>
********************
Hi, My son has EDS and Chiari. He is 18. The National Institute of
Health and The Chiairi Institute in NY are working together on this
combination of patients. My son has gone to both places for a
workup. Both conditions where found on the same chromasone just
months ago. So they now know they are related. The Chiari Institute
has found that one out of every 3 of thier patients have EDS also.
The compications of the two conitions together are being studied
now. It is believed that this creates a pain syndrome. Pain that is
out of proportion to the problem. Also high insodence of Autonomic
Dysfuntion/POTS. There will be more info soon coming from the
continued work they are doing.
Sorry for my spelling mistakes, I do much better with spell check :~)
Cindy Clark