Community Voices: Katya @positivelychronictravels 'Living with Ehlers-Danlos Syndrome (EDS)'

[@andethidialbubabibub3261]

Have my diagnosis.. Finally.. I had symptoms for my whole life, was looking for an answer for 10 yrs, so many docs and even my own family partially didn't believe my pain and problems. One year ago I found the answer and now I have a specialist saying the same in his report after a genetic test to make sure it's nothing else: H-eds Worst time to be right but at least I know now. Ty for sharing your story ❤️, always feel obligated to share mine aswell. Stay strong

[@Zx9rc1]

I was diagnosed with chronic daily headaches 15 years ago, since then broke my back, arms legs, snapped both ligaments in both ankles and had to have both ankles reconstructed with a brostrum brace found out it’s all because of EDS and possibly osteoperisis

[@BigWolfBandTV]

Awesome, diagnosed at 27. Lots of issues. Very useful, I was blessed with an amazing GP who put all my symptoms together, diagnosed in London. Been through a rough 2 years after shoulder op, struggling to play guitar and coming back to your point, adapting, help, accepttence and lifestyle changes.

[@TheEhlersDanlosSociety]

Here's hoping your recovery continues and you can play as you once did soon.

[@lilylegacy-zierer7397]

Thank you for sharing your story. I had a similar childhood and understand how difficult the process towards diagnosis is. You’re very articulate and well spoken and very brave.

[@MrsXx]

Great video for the newly disngosed. Did you go private? I can't manage & my body is twisted & repeatedly subluxing/dislocating, there's no pain relief strategy other than bedrest, ice & heat. I'm bedbound 95% of the time. Who was the EDS specialist you saw in London? The rhuematologist I saw didn't know eds.

[@riju3184]

Sadly that's common even in the states. Many rheumatologist even if they know it won't dx it. They feel only a genetics can...which is untrue any doctor can. I hope you find someone. I had to drive 14hrs round trip to get a dx after years of fighting. Good luck friend.

[@MrsXx]

@@riju3184 thank you for replying, sorry I didn't reply sooner. This is the same experience I'm facing. They have said it's connective tissue disorder but aren't comfortable diagnosing which one as I display different things. Its exhausting trying to find a Dr who cares enough to want to understand.

[@riju3184]

@@MrsXx it really is. I live on the north east of the US and my new rheum is in the far south west of the US. Thankfully with covid we have okd video visits. Which is super great. And easier for people like us on bad days.

[@fairwitness7473]

Call around to physical therapists and find one that works with EDS patients and then find out which doctors refer eds patients to those clinics. Also, here in the states, psychologists and chiropractors can diagnose as well.

[@onefabknitternz]

It’s the same situation in my city in New Zealand . The only eds specialists are out side my city and are private, so the public health care system won’t fund you to see them . It’s frustrating to say the least . No one here is trained in eds . I was misdiagnosed with FND for months in hospital so was doing physio for the wrong condition . I now can’t walk more than a few steps due to all my damaged joints , no apology from hospital yet and waiting on wheelchair last 8 months . ♿️

[@arjun63]

Brilliant video

[@gafsabux8389]

Thanks for sharing ♥️ from Gafsa Bux 🇿🇦 ♿ 🦓 🌈

[@thaispicchi3557]

Amazing vontributions

[@onefabknitternz]

I have major issues with my knees , ankles , lower spine and neck ever since being in physio in hospital . Currently waiting for wheelchair (8 months so far ) my dr put in a treatment injury claim .