Collagen Advocacy Network - EDS Advocacy Group

[SugarSquared]

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.

 

[Jonathan Edwards]

That is a useful site, I think. It shows what genuine EDS disorders are like very nicely. I am not surprised that people with real EDS are getting fed up. Good on them for putting this together.
The people I have met with actual EDS were bright and cheery like these folks but quite obviously had something different about their connective tissues - either to look at or on vascular imaging. Generalised hypermobility isn't really the issue in EDS. All of the EDS syndromes are rare.

I doubt that new criteria for 'hEDS' or 'HSD' will achieve anything because the concept is as long as a piece of string. It is like being tall - there is no basis for a cut-off.

 

[Chandelier]

Their Instagram poster campaign as texts:

"After moving states in 2024, my referral to a new cardiologist was denied, citing that they do not treat EDS or POTS.
I have seen cardiologists all my life, and all of a sudden have had two turn me away because of the EDS label.
I don't have POTS. I don't have hEDS. I have VEDS."
-Vascular Ehlers-Danlos Syndrome Patient

"I have seen a rheumatologist every year since I was 5 years old.
This year, I was told I no longer fall into their scope of care because they do not see EDS."
-Classical Ehlers-Danlos Syndrome Patient

"Before a spinal fusion, I told my anesthesiologist that I had a rare form of EDS.
He said I have patients with EDS all the time and have never seen any complications'.
I woke up with multiple stitches in my throat from a tear due to the intubation."
-Classical Ehlers-Danlos Syndrome Patient

"I was clincally diagnosed with Classical EDS because of extreme scarring, bruising, dislocations, and kyphoscoliosis.
I was an expecting father, so I got a genetics referral to understand my condition molecularly.
I was denied testing because of a new 'no EDS' policy.
Years later, I came out of pocket for testing.
I had two pathogenic variants in each PLOD1 copy. Kyphoscoliotic Ehlers-Danlos Syndrome. I am now monitoring for aortic ruptures."
-Kyphoscoliotic Ehlers-Danlos
Syndrome Patient

"I have family members who were diagnosed with VEDS through genetic testing in 2010.
In 2021, l had an aneurysm.
I needed to see a geneticist.
The receptionist explained that there was a 3 year waitlist for EDS.
I spent 4 months begging to bypass the waitlist. In that time, I had a bowel perforation. Now I'm diagnosed with Vascular EDS."
-Vascular Ehlers-Danlos Syndrome Patient

"I waited a year to be seen at an 'EDS clinic'.
The day before my appointment, they told me my case was too complex and they didn't have resources for me and that my appointment was cancelled.
I am not complex, I am the hallmark presentation of Classical EDS."
-Classical Ehlers-Danlos Syndrome Patient

"I was told by a doctor that they 'see EDS all the time and it doesn't look like THAT'

I have dermatosparasis type."
-Dermatosparasis Ehlers-Danlos Syndrome Patient

"I went to the ER for severe pain in my throat. The ER doctor said it's GERD and that it's very common in hEDS.
I explained I had VEDS, but I was sent home anyways.
The next day, after choking up blood, I returned to the ER.
I had a tear in my esophagus."
-Vascular Ehlers-Danlos Syndrome Patient

Collagen Advocacy Network — Rare Ehlers-Danlos Syndrome Advocacy

A nonprofit advocacy network for individuals and families living with monogenic collagen disorders, including the 12 rare genetically-defined subtypes of Ehlers-Danlos Syndrome.

collagenadvocacynetwork.org

 

[Jonathan Edwards]

Their Instagram poster campaign as texts:

Makes complete sense. I can imagine exactly what goes on.
Some of my colleagues have a lot to answer for.