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Good Morning #EDS #EhlersDanlos Twitter
This is long thread on issues the past week with The EDS Society, my ideas to move forward & after this I'll be quiet on Twitter for awhile. It's time to do behind the scenes work now, I'm fortunate to have the resources to do so. 1/
On Nov 05 the fantastic (& brilliant) @DrEReinhold dropped this long anticipated paper on prevalence of hEDS Conclusion : not rare. The community was ecstatic. No more refusals from dctrs to test for EDS because it's *too rare*
The same day, The EDS Society posted an unsigned letter (later signed) challenging this paper. Issues? Use of 'JHS' patients (the Demmler paper dates back 27yrs, dx was called EDS 3-JHS) & that many would now be considered 'HSD' based on new criteria
The CEO of the EDS Society, Lara Bloom, posted a critique of the paper to Instagram, calling it 'irresponsible'
This knee jerk criticism led to a lot of push back from community, questions about HSD, concerns about it being used as diagnostic tool. It was created as research tool, hasn't been validated for dx & is being used to deny care as HSD has no ICD code
icd10data.com/ICD10CM/Codes/… 5/
As usual, total silence from EDS Society.
Some of us looked into Criterion 2 of new standard,
MVP is only found in 5% of EDS pts. Aortic root dilation in 2%. Papules are not an EDS thing at all. Women are often not allowed to count their stretch marks. Scars are subjective 6/
You MUST have 5/12 on this criteria in order to get an hEDS dx now. 5 of those are near impossible. So most need 5/7. Those 7 remaining are unusual & include Marfan Habitus. Sometimes seen in hEDS, but not common. Blue sclerea is much more common 7/
ehlers-danlos.com/wp-content/upl… 7/
I'm Marfan Habitus. So is CEO of EDS Society. We lean more towards some of new the criteria as well (MVP, prolapse). A little less towards things like blue sclerae. Kind of like we have our own gene. Here she discusses MVP & proplapse w her marf hab
thejc.com/lifestyle/feat… 8/
I wonder abt criteria. How & why did they come up w these markers? Many don't fit. Some of us exactly fit. Oddly, we were minority in hEDS circles prior to criteria (marf hab no sclera). Based on a poll I ran yesterday, it looks like we dominate it now
So, HEDGE might have a lot of Marf Hab, heart involved, prolapse type EDSers. Which is fine, I do think we are a separate gene. But the rest of you might get your dx dropped. Very bendy, velvety skinned, blue sclerae *original* hEDSers could get dropped off. Into HSD abyss 10/
That's the biggest issue here. It's fine to look for a specific gene, It's fine that it seems to match CEO markers, she does have EDS. It's not fine to say that other *types* are not hEDS anymore. I'm not saying that's what's happened...but this data needs explored 11/
The trouble is...the data is locked up. Even researchers can't seem to get open access. So we may not know what *criteria* the new hEDSers have until the gene study is done. That's a very big problem
One community member, Kaaylyn, posted to her blog & Instagram, sharing all concerns. One of her biggest concerns? Lena Dunham. Lena wrote about molesting her younger sister. Kaaylyn is an abuse victim
Two days later, the EDS Society put up a Lena Dunham post on Instagram. Kaaylyn, a sex abuse victim, spoke out. She was called a 'cyber bully' The EDS Society 'liked' that comment.
Kaaylyn was harassed on line for speaking out, and she's currently in hospital. Her stress levels through the roof & her health deteriorating. The Lena Dunham post is still up. This is an org who jut did a conference on :
Friends...this is just the past week.
We do need to move forward. As many of you know, myself and others will be working on a letter to send to WHO/ICD challenging the criteria. Anyone who would like to join pls email HSD2017Review@gmail.com
My other suggestion? Email the Chair, Susan Hawkins. That's where the buck stops. I've heard she's smart, gracious & supportive. Tell her your concerns. Keep it polite, professional and state you expect response. From the Chair
I also recommend following @BendyBrain on Twitter because right now, what we need in our community is good research. She is doing a ton and it will be game changing
I'll be on a short Twitter break to hopefully get a lot more done than I can do here. Please share this thread
Just adding an amendment/correction for posterity : researchers have not been refused gene study data, it just isn't open access yet. Hopefully it will be soon...
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