SugarSquared
Established Member (Voting Rights)
Has anyone heard of the Collagen Advocacy Network? It seems to be a new group (first post on Instagram was on March 12) that focuses on the stories and needs of people with genetic EDS types. Their Instagram bio is “Advocacy & community for people with rare and ultra rare Ehlers Danlos Syndromes, by us, for us ”
I’m sharing this group because I saw a post on their Instagram today sharing how the changing perception of EDS is harming those with genetic forms of EDS. If you’d like to see the quotes from patients, here is the link.
I think this is a very important conversation to have because I’m seeing hEDS just being called EDS and overriding the experiences of those with genetic forms. I’m also someone who saw a rheumatologist early on into my diagnosis journey because I thought I could have hEDS and that it could help bring me some clarity. I didn’t fit into that criteria and have since learned, thanks to this group on here, that the reality is much more muddy than what is portrayed on social media.
I wonder if the upcoming new criteria for hEDS and HSD will bring any clarity to this issue.
I’m sharing this group because I saw a post on their Instagram today sharing how the changing perception of EDS is harming those with genetic forms of EDS. If you’d like to see the quotes from patients, here is the link.
I think this is a very important conversation to have because I’m seeing hEDS just being called EDS and overriding the experiences of those with genetic forms. I’m also someone who saw a rheumatologist early on into my diagnosis journey because I thought I could have hEDS and that it could help bring me some clarity. I didn’t fit into that criteria and have since learned, thanks to this group on here, that the reality is much more muddy than what is portrayed on social media.
I wonder if the upcoming new criteria for hEDS and HSD will bring any clarity to this issue.