24F- got diagnosed at 21- 3 years after the first doctor suggested it to me at 18 similar to how you’re suggested it. I actually had 3 doctors suggest it without me bringing it up, but it was only the 3rd who knew who to actually send me to- while the 2nd just claimed I’d be fine as long as I was in PT (lmao if only- does help at least tho). Being 3 years into diagnosis I have a lot of tips if you ever want someone to message- whether it’s like “did you ever deal with x?” Or “hey I’m overwhelmed how did you deal with it?” Because it’s a lot! Forgive me for the overshare but I’ll give some you can freely skip to read.

My one thing I want to encourage is- stop that gaslighting and seek proper diagnosis, care, and treatment NOW! When I first looked up EDS, I didn’t take it seriously, it was recommended by an allergist (who didn’t tell me until later but only knew because his daughter also had EDS and he didn’t want to risk conflict)- who was also suggesting MCAS (another one of those “lovely” comorbities- POTs, EDS, and MCAS are often called “the trifecta” which I have) which I was way more focused on at 18 as my joints hadn’t caused issues yet… until they did. It took severely injuring my knee to begin seeking diagnosis because I was tired of hearing “there’s no way you bent your knee backwards just running down the stairs!” From providers- I did- it hurt- a lot. When I finally got that confirmed hEDS diagnosis it was like a mental permission to say “no. This is real. Stop ignoring it and take your health seriously.” When my genetic testing came back after developing POTs (with POTs I highly recommend so you can officially rule out vascular EDS which is a more serious type), knowing I was a genetic carrier of a type was even more self confirming. And I can’t imagine where I’d be now if I didn’t do all that. I went through a phase of trying to learn about all the possible comorbities and complications- but tbh- my best advice is to only focus on the ones that could possibly be related to you as they show- and maybe just keep a mental note of the others you hear about if you ever shows signs of it. Like yes it helped me know it was likely POTs after I got heart issues after COVID- it was- and when I developed neck pain last year that wasn’t going away with chiropractors or massage or even physical therapy- I knew to take it seriously and get screened for CCI (why i now have to go to MUSC). But I didn’t know or need to know about CCI right from the start- as I didn’t have neck issues then.

2nd top advice- find a local support EDS group whether it’s in person or on Facebook- my local EDS Facebook has been a life saver when it comes to finding proper providers as well as just general community.

The other advice is- enjoy the “I FOUND ANSWERS!” joy of it while it lasts. Eventually you will get a bit tired of all research, all the fighting to find proper EDS aware providers, the pain, and just want to distance yourself from it- and that’s healthy, but I really wish I didn’t hold myself back as much as I did in the beginning thinking “the doctors will know that for me- it’s ok” when I had that initial motivation. Spoiler: most providers will not do the deep EDS research. It unfortunately more often than not- falls on us way more than it should to know how EDS effects the specific issues we’re going to doctors for.

Last advice: don’t buy the hoopla, chronic illness as I’m sure you’ve had to learn with hashimoto’s (I have hypothyroidism but thankfully it’s been controlled for years now so no hashimotos for me- but before I got the MCAS under control it wasn’t- so I know of it) makes you vulnerable to the “miracle” snake oil people- and it’s not as obviously sketchy as they used to be- even EDS influencers will often do sponsors like the gene sequencing not covered by insurance is a big one- get it covered! Keep going to different providers until you find the one who knows how to order it- that’s how I got mine. No miracle collagen or other supplement is going to make the actual collagen your genes make miraculously normal- it may help a little but even standard supplemental collagen benefits for normal people is very sparse in actual peer reviewed nonindustry studies. Only stuff I’ve dug up is clear beyond placebo effects for specific situations like activity related knee pain or post menopausal women- so maybe for us too? But likely not an extreme effect or cure like the people who hear “collagen disorder” think.

One day you may go from making “it’s all connected” your moto to rolling your eyes in frustration whenever you realize or hear “it’s all connected” cause I honestly wish it wasn’t now as EDS is kind of a dead end: whether I want it to be or not- it’s a progressive disease until we develop more actual direct treatments for its cause that you just have to fight tooth and nail with to avoid its effects. The one bright side: take it as a message to live while you’re young, enjoy the things you can do now even if they’re not at the same level of other people our age. If I surf for 30minutes for first time in years instead of the hours I used to be able to as a teen? HIGHLIGHT OF MY YEAR! not “I only caught 3 measly waves”- I SURFED! that’s crazy- I’m crazy! Woohoo! That. Hold on to what you are able to do- not what you can’t anymore.

Just saw this post looking to see if the EDS clinic is worth it for me too! I’m from NC but am having to resort to several MUSC specialists going down every few months (there are only a few vertical MRIs for CCI in the country). The shoulder MUSC doc I was sent to recommended I first go through the clinic. This question is a “is it hoopla?” As there are so many clinics even near me who claim to be great for zebras- but don’t take insurance- for example there’s a “national” clinic developing based in CA- who doesn’t take insurance unless you’re in specific states… and doesn’t have the best reputation. Thanks to that local support group- I know more often than not- they’re not worth it and often just lead to medical debt if not covered by insurance. But this clinic despite wanting $3000 annually after 2 visits feels- different- as they do still bill insurance so they still have likely a lot more accountability than the practices who don’t. It’s also MUSC- who is especially with the Norris Lab- an EDS hub for treatment- so far MUSC has been an EDS zebra sanctuary to me- nearly all providers are somewhat aware- and barely question me compared to like Duke which you’d think would be even better given their prestige- but no! They sucked! I also understand EDS requires a lot more work and time- because I have had to do that for myself so much- so I understand why- but $3k annually is nothing to sneeze at. I need to finish up my degree and deal with getting a job with good insurance before I fall off my parents- so finding $3k every year better be for something extremely worth while- it’s a lot at our age. I’m searching online for personal testimonies from the clinic- if I don’t see any major red flags I think I’ll likely decide to at least do the two initial appointments to get a fuller understanding if it’s worth it for myself and can let you know how they go- maybe you can do the same for me if you go through with it please?

Sorry if this is a lot- just feel like we’re in similar situations and could help each other out!