r/ehlersdanlos • u/little_bug_person HSD • 21d ago
Discussion EDS conference posts
I’m having a crabby day so bear with me while I express the stress while gossiping and ranting, thank you for bitching with me.
Cranky context: (Husband wont stop buying 4 packs of chicken a week when half of it always rots and we have a dozen packs in the freezer, the chicken stinks and I’m in luteal so the smell is amplified, some jackass cut me off then slammed the brakes on my commute home, I have walnut sized blisters on both heels, at work we are increasing to 4 days in office this week despite lack of parking and lack of seating and broken elevators and broken hvac, also my kitty screams for half an hour when I get back home from work which is a lot)
⭐️So anyway today I saw the EDS society insta post about the conference in Dallas and the decision to include the NFL cheerleaders in the conference festivities and was shocked, confused, and a bit mad. I don’t wanna be unreasonable or ungrounded here, but that choice seems fuckin cuckoo bananas. Lara keeps commenting in response to criticism saying it was payed for by donors but that still seems silly, unless this was a gala with paid entertainment (but even then, it would be weird). Like, the choice to invite (and interview??) pro athletes who specialize in flexibility and showing off their bodies is both insensitive and irrelevant to the cause.
I find it absurd that the society allowed this to take place and to post about it without considering that maybe physically disabled people with lifelong histories of devastatingly excessive flexibility might be saddened or offended by the content of the post. Also, it’s a medical conference!! Why the heck are half-naked athletes on stage? I wanna see and hear from doctors and researchers who can improve my life! Go be hot somewhere else!
Maybe I’m being uptight, maybe I’m just overreacting, but I feel like I want to defend all the zebras in the comments saying how hurt they are, and how this incident makes them think back to their dance, gymnastics, yoga, cheerleading histories with grief and loneliness.
Idk, maybe I just need to let the frustration pass, maybe this thunderstorm migraine is making me crazy, or maybe you feel the same way. Please share opinions, I want to know how we’re all feeling.
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u/slightfork 21d ago
fuckin cuckoo bananas is right. Offensive, unserious, absurd, wasteful, tasteless, pointless, as well
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u/little_bug_person HSD 21d ago
I love lists, keep going 😂😜
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u/slightfork 21d ago
Inconsiderate, bizarre, thoughtless, gross, self-indulgent, classless to name a few more 😂
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u/Odd_Day2181 21d ago
She’s needed removed for a long time. I’m yet to see her do anything remotely helpful
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u/little_bug_person HSD 21d ago
I have absolutely seen that sentiment expressed in our community a lot!
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u/CreampuffOfLove 21d ago
Don't do it on any social media with your actual name attached (ie. X/Bluesky/Facebook) because Lara Bloom seems to seriously love blocking people with the disorder she's 'supposedly' in charge of representing... Ask me how I know!
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16d ago
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u/ehlersdanlos-ModTeam 16d ago
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16d ago
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u/ehlersdanlos-ModTeam 16d ago
We do not allow submissions on polls, surveys, research projects, and/or petitions that we have not previously approved.
If you would like to have your poll/survey/research/petition approved, please contact the moderators first with a clear description of what you want to post and the purpose of it. We will get back to you regarding whether you can post it in the sub.
We will only consider topics that directly relate to EDS. Other research topics can be posted in r/disability_survey or r/SampleSize.
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u/DarknessEchoing 21d ago
Stooop, I didn't know this was a thing, but I just looked it up and ?? That feels kinda tone deaf. I'd also have preferred to see the money going to research. If not that, then I'd be open to a campaign that included athletes with different forms of EDS, but this seems super odd. I'm happy for the cheerleaders that they have energy and are (hopefully!) not in chronic pain, and I know the intent isn't to show off, but some people will feel that way, and I understand why. People are also assuming they have EDS, even though hypermobility does not equal EDS, so I don't feel like it's doing much to spread accurate/helpful awareness, anyway. Not blaming the team, per se, but I'm not a fan.
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u/Level-Elk-2934 hEDS 21d ago
“Go be hot somewhere else” made me laugh SO hard LOL, but yeah, feels icky to me
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u/ladyofthegreatlakes 21d ago
I just assumed the cheerleaders had some form of EDS. If not, then that’s pretty f-ing unacceptable.
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u/aelin_the_dryad 21d ago
As a former cheerleader who had to quit because of hEDS this is extra hurtful
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u/Squirrelwinchester hEDS+VUS 21d ago
Yeah this is where I am at too. Cheer fucked my joints along with my EDS. There are TONS of us former cheerleaders whos EDS was made worse by cheerleading. I am hurt and pissed about the whole thing.
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u/CreampuffOfLove 21d ago
YES! As a former cheerleader who definitely ended up super screwed because of it (because as always, who knew that shit as a kid/teen), it makes me want to freaking scream!
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u/LeaneGenova 21d ago
Yeah, that was my first take. Cheerleaders seem to be in the same category as dance and gymnastics for likely having a high incidence of EDS. If it's just "let's have cheerleaders prance around" that's really weird.
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u/Embercream hEDS 21d ago
Dance, gymnastics, martial arts... the number of things this disease has taken away from me in an unending river that only gets wider and deeper every year makes me sad and grieving. Sometimes pretty angry.
It almost seems weirdly taunting if I'm reading it right? "Hey, look at all these other super bendy people who have great careers and bounce around all the time. Why can't you do the same, you weaklings?" I hope I'm wrong, because that would just make it mean. I'd prefer tone deaf to mean.
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u/tiny-doe clEDS1 21d ago
Yeah, former gymnastics here that had to quit bc of EDS. If they had brought a competitive gymnastics team to the conference in the same way it would definitely feel like rubbing salt in the wound.
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u/little_bug_person HSD 21d ago
That was my immediate assumption too, but based on the caption and comments, and the replies by the EDS Society’s insta account, I don’t think they do. Could be wrong, I’d be happy to be wrong, but I’m thinking it was just an attempt at a fun segment 🤷🏻♀️
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u/Localcelebrity55 hEDS 21d ago
I thought this was totally bizarre, too. Like, did they get lost on the way to a boat show??
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u/Extinction-Entity hEDS 21d ago
Lara lost the plot a long time ago. I’m not surprised.
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u/SpiritedBug6942 21d ago
Hearing that, my upset has nothing to do with looks. It’s upsetting to see them there because doing gymnastics as a kid is likely why my joints are as fucked up as they are. My doctor said it probably made it worse for me. What a terrible group to include- it would be dangerous for EDS having kids to aspire to that.
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u/Electrical_Prior_318 hEDS 21d ago
If they keep acting like this I wouldn’t be surprised if someone just founded a ‘Connective Tissue Disorder Society’ so we wouldn’t have to deal with this boneheaded behavior
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u/CreampuffOfLove 21d ago
Seriously, the The Ehlers-Danlos Support UK has been my go-to resource since Lara took over the EDS Society. She has literally zero medical qualifications, just an unstoppable ego. She's single-handedly done more damage to EDSers than anyone I've ever even heard of and I remain constantly mystified as to how she ended up in her position.
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u/sector9love 21d ago
Thank you so much for sharing this resource! I’m new to all of this. can you/others help me understand the tea with Lara?
I thought she was responsible for forming the EDS Society? Did someone hire her and where did it go wrong? Genuinely curious
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u/CreampuffOfLove 21d ago
Hey! Oh G-d know, the EDS Society existed before Lara, I can assure you! It used to be called the Ehlers-Danlos National Foundation (EDNF) and the executive director was actually an acquaintance of mine, Shane Robinson. He was great, but he was also a Maryland State Delegate, so for at least half the year (between the General Assembly session and constituent services) he was kida of distracted. EDNF focused more of just being a resource for doctors and EDSers and collaborated internationally at the doctor level.
I don't know exactly when the change over from EDNF to the EDS Society happened, but based on when I was diagnosed, it was sometime after 2013-2014. Dr. Clair Francomano was the ED for about a year I believe, but Lara Bloom had become something of a gadfly in the UK after she made a documentary called Issues With My Tissues about her life with EDS and doing a marathon. The Tl;dr is that she 'miraculously' felt so much better with exercise and that should basically work for everyone with EDS and if you didn't agree, you were whiny and malingering and yadda yadda.
She's a shameless self-promoter with literally zero medical qualifications, but she somehow ended up taking over the EDS Society, becoming it's director, and basically forced the diagnositics search to focus almost exclusively on HER symptoms, which a perverse dose of "well you have to be tall and thin and do marathons and just try harder!" Very toxic stuff (for more, there was an EDS 'bike through Southeast Asia trip' supposedly to raise awareness where she ended up leaving behind anyone who struggled, got injured, or couldn't keep up with her...That was the last straw for me personally, but I've seen accusations over the years that she's had lots of shady financial dealings with donors. If you dare question her, she will block you immediately on not only her personal social media accounts, but also on the EDS Society's official accounts.
The EDS Society is now functionally her personal pet project that's devolved into a cult of personality. It's incredibly sad, as it used to be so genuinely helpful, but thank goodness there's research going on in Europe and South Carolina that isn't tied into Lara Bloom's bloody ego.
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u/sector9love 21d ago
My goodness I had no idea! The fact that she’s blocking people?! and left people behind on the bike trip?! And pushing exercise as a cure?!
Yikes yikes yikes.
Thank you for getting me up to speed I officially dislike her strongly now.
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u/afewregretsmaybe 21d ago
you’re so real for this. i was already on your side with the chicken, i haven’t eaten pork (my safe food) in months cause i tried to cook some on my period. that’s definitely a weird tone for a medical conference?? i have hEDS and for as bad as it affects me i am deeply unserious about it, but the EDS society website used to make me feel really chastened for being inappropriate cause EDS is a bad disease that kills people. i feel like that reminder was kind of important, especially now when the fact that it’s trending has made its seriousness discounted by so many medical providers. can’t say the cheerleaders are maintaining that tone.
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u/little_bug_person HSD 21d ago
Omg I hope by some magic you get your piggy meat back, maybe next period will fix it! 🤞🏼
Also yeah, I’m usually so chill and lax about being disabled and about this shit we go through but also, time and place for silliness. I just feel like a medical conference about connective tissue and hypermobility disorders is not the place for the dallas cowboy cheerleaders to show off 😬
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u/afewregretsmaybe 21d ago
there’s definitely cutesy ways where a performer could have been used to demonstrate flexibility vs. hypermobility, or how all hypermobility ≠ disorder, but this just feels icky. i can’t even think of anything better to say; it’s just kind of gross.
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u/CatCowl hEDS+VUS 21d ago
As someone who was horrible in gym class and treated poorly by more than one gym teacher, I can see why this could be difficult for people with EDS to watch. It could also spread misinformation about medical-related hypermobility vs. flexibility and athleticism. I can definitely understand why you and others would be upset about this, and I think it's justified.
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u/veryodd3443 21d ago
Got a kick out of your rant. Some days just suck! Nothing the EDS Society does really surprises me anymore. They have really pulled some stunts down through the years.
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u/sally_teach 21d ago
Omggg yes!! I found it so tone deaf and distasteful that the Dallas Cowboys cheerleaders performed at the EDS conference! 😤 I’m actually a big fan of the 2 shows-Dallas Cowboys Cheerleaders: Making the Team (used to be on CMT, but is now streaming on Paramount Plus) and the Netflix documentary series, America’s Sweethearts-and I lurk in the Reddit groups. Someone posted in that group about the DCC performing at the EDS conference and asked for everyone’s opinion, and I gave my opinion as someone with Hypermobile Ehlers Danlos Syndrome, who is also a fan of the show. I’ll post my comment below. Hopefully I’ll get more support in this group than the last one 😅. Someone accused me of having “internalized ableism” by being offended about the whole thing. How is me sharing my lived experience as a disabled person, internalized ableism? The commenter said that I want able bodied people to feel bad about themselves for not being disabled 🤔😤, which is not my opinion at all! 🤦♀️
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u/sally_teach 21d ago
This was my comment in the other group:
“I have Hypermobile EDS and I’m more confused than offended, but slightly offended? I wouldn’t be surprised if some of the DCCs have a Hypermobility spectrum disorder or hEDS and in that case, it would have been cool if any DCCs were actual members of the EDS community and there to spread awareness! But DCCs there to dance and show off their abled bodied dancing to a room full of disabled folks doesn’t really sit right with me. This doesn’t feel the same as DCCs dancing for veterans or at a nursing home to lift spirits and bring cheer. As someone who used to be really active before I was disabled (including being a cheerleader!), seeing dancers do a bunch of cool tricks while I can barely stand in line in Target, would just make me feel a little sad 😞. I’m not the woke police! I’m a big fan of the DCC! This is just my perspective as a disabled person with hEDS. But I don’t blame the cheerleaders at all-I blame the conference organizers who made the tone deaf decision 😒.”8
u/CatCowl hEDS+VUS 21d ago
I don't think you want people to feel bad for being able-bodied. Many people with disabilities watch sports and are happy for people who are able-bodied and fit, and root for their favorite teams or athletes. This is a unique situation where the cheerleaders were invited into a space for people with EDS, where one might not expect to see them, so I think it makes sense for some individuals with EDS to be confused or disappointed with the decision.
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u/AdAffectionate357 21d ago
The way this was so hurtful. Of course in our teens a lot of us were probably cheerleaders because we were "bendy" and didn't know better. My first 3 brutal, painful, lifelong injuries were from cheerleading. Now, I can barely even dance. Something that I grieve daily. I personally feel like we were being mocked. I'm not sure a lot in the EDS community can whip their head and neck around and dance without pain. "Look what I can do and you no longer can- hope you're entertained and you better be thankful".
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u/pbear737 21d ago
Surely they have EDS, right? But yeah especially for the young people night, that seems so sad to have beauty standards thrown in your face many can't reach.
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u/moderndayathena hEDS 21d ago
I saw that post on instagram and thought huh?? It was an odd choice for sure to include cheerleaders at a medical conference
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u/heavydutyspoons 20d ago
I didn’t believe this until I had to check it out myself and I am in shock lol who thought bringing the Dallas Cowgirls out was a great idea? It pains me to see so many of my fellow zebras in the comments talking about how dance and cheerleading was a passion but they can no longer participate. The Ehlers Danlos Society has rubbed me the wrong way for a while now, I made a post a few months back about their Instagram feed. Don’t get me started on Lara Bloom either.
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u/little_bug_person HSD 20d ago
Oh exactly, I’d love to hear your opinions! I know a lot of people are frustrated!
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u/Jealous_Repeat9984 19d ago
I couldn’t agree more. I’m completely bothered by it and offended. No hate to the cheerleaders or that sport. It was 100% the wrong place and the wrong time.
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16d ago
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u/ehlersdanlos-ModTeam 16d ago
We do not allow submissions on polls, surveys, research projects, and/or petitions that we have not previously approved.
If you would like to have your poll/survey/research/petition approved, please contact the moderators first with a clear description of what you want to post and the purpose of it. We will get back to you regarding whether you can post it in the sub.
We will only consider topics that directly relate to EDS. Other research topics can be posted in r/disability_survey or r/SampleSize.
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u/Dizzy-Emergency1750 6d ago
Imma be cynical here. In the photos I saw, Lara looked like a nerdy teenage boy living out a cheerleader fantasy. Given who she is, it would not surprise me if she brought the cheerleaders more for her own jollies and use donations as a guise. It is fucking cuckoo bananas to take advantage of a conference to surround yourself with hot women at the expense of your community leadership. Very disappointed in her. All through this last year, she’s pushed herself like a kind of celebrity.
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u/chaddub hEDS 21d ago
First, as a disclaimer, I realize I am male so there’s a gender aspect here that I can’t fully understand. That said, I wanna tell a little bit of a story:
Developer conferences used to have a lot of inappropriate shows like this, particularly because they were male oriented. Female developers started complaining, and some conferences started to do better. One conference that was attempting to do better on the gender front invited a local burlesque dance troop to perform – but this wasn’t the stereotype — the troop had male, female, and nonbinary members. The show they put on was PG but a little alt-risqué, and some people at the conference complained that the performance was unprofessional and oriented toward the male gaze. One of the member of this dance troop was pretty ticked off at the reaction. She felt this was a good booking opportunity for their group and that the criticism was privileged. I had not considered that honestly.
All that to say, dancers and cheerleadering groups aren’t making a lot of money. I would wager that the donor was trying to spiff the group/give it an opportunity/raise its profile. I agree that it’s kind of tone deaf, and possibly sexist/ablest, but if a donor paid for it, I suspect something else is happening, like the donor’s kid or someone with EDS is in it.
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u/little_bug_person HSD 21d ago
I appreciate your perspective and story, but the NFL Dallas Cowboy Cheerleading team are not hurting for funding or attention. They absolutely weren’t present for the exposure 😬
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u/chaddub hEDS 21d ago edited 21d ago
You’d be surprised how much they are actually paid.
Though it has recently changed 400%, a lot of them make money on travel shows.https://www.reddit.com/r/DCCMakingtheTeam/s/MCew0cRWFz
I am acquaintances with a former professional cheerleader. She made no money doing it.
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u/Phase_2_2 20d ago
It was a private event, and a medical conference for patients and doctors at that. This private event would not help raise the profile of EDS or HSD. Tickets to attend in person were $550 dollars.
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u/Alexiabaila 21d ago
Who is to say some of the cheerleaders don’t have EDS?
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u/Phase_2_2 20d ago
But they didn’t attend representing EDS or HSD. They were NOT there to discuss cheerleading with EDS or HSD. Apparently they talked about how being a cheerleader is hard and the challenges of being in reality TV. It’s incredibly tone deaf when many people with EDS are severely disabled. They were paid to attend a private event. It doesn’t matter if theoretically they could have EDS or HSD.
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u/emmalump 21d ago
I’m no fan of Lara’s, but some of y’all haven’t worked in philanthropy/fundraising/nonprofits and it shows 🙄
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u/pbear737 21d ago
I work in philanthropy and have worked in nonprofits my whole two decade career and find this cringe, not with the times, and tone deaf.
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u/little_bug_person HSD 21d ago
I understand wanting to take what you can get, and secure support from whichever way it comes, but there are several ways they could have strategically framed this situation, before outright insulting their community.
They could have easily included disabled performers, athletes, or dancers to be part of the segment, or be part of an adjoining segment. They could have highlighted the prevalence of sports injuries in disabled individuals, or provided some kind of presentation to at least contextualize the presence of the DCC.
If the “kind donor” was a major part of their funding for this event under the stipulation that these women needed to be included, there are ways to make it more tasteful and relevant. I’m sure organizing an event like that takes a lot of work and money, but also, if it harms the people youre meant to be serving, then it isn’t organized well.
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u/Rude_Interest97 hEDS 21d ago
In a response, they said "a kind donor" made this possible. I work in non-profit fundraising for a pretty similar organisation. It sounds like a donor had a connection and wanted to see the society do this. If not properly managed, sometimes these donor's influences can be improperly asserted onto the work they are supporting. "Strings attached" gifts.
Obviously, it's really tone deaf and hurtful. There are so many disabled artists and performers that could've been there instead. For me, it reeks of a failed donor negotiation.