Hypermobile Ehlers Danlos Syndrome:My Story

Hypermobile Ehlers danlos Syndrome, my story. This is the history of how I went undiagnosed for most of my life and then finally received my diagnosis of connective tissue disorder hEDS in my 40's and how I've been making my life better since then.

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A little bit about me:
Hi I'm Purple Ella and my family is an autism family with three out of five of us on the autistic spectrum. I also have a connective tissue disorder (hypermobile Ehlers-danlos syndrome). So life can be a challenge but also a lot of fun.

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[alexmyoga]

I like you sharing that part about not knowing what’s normal when you’re a kid, exactly how I feel.

[yunhee]

I think some of us have a hard time expressing what is physically bothering us .

[KristiChan]

Basically if you're a woman and/or a minority, getting a doctor or psychiatrist to take you seriously, at best, annoying, at worst, dangerous.

[noor-]

I am hypermobile, which I only knew at age 25 because a chiropractor randomly told me that this was the cause of my chronic pain. It explained the physical problems I've had my whole live and was such a relief. But I don't have an official diagnosis cause the doctors I've seen act like if hypermobility is not a big deal?!🤔 When I mention it they act so light about it, I don't understand because it's huge... it changes my whole lifestyle. Your video reminded me that I should try again to look for a doctor well educated on this so I can get the support I need and deserve.

[sammyrevo]

Just got diagnosed at age 22 after suffering extreme fatigue and pelvic organ prolapse has been one roller coaster not to mention the eyes that feel like sands been thrown into them

[GwenC]

Overwhelming to hear a story where I can relate so much and see how actually hard my way is... I'm glad you had a diagnosis. Sending support for that hard everyday life !! We're not alone !

[daniellepereira]

Recently diagnosed with EDS. And yes, a lifetime of pain and gut issues. It's not easy. x

[PJ-xsjx]

Symptoms from infancy for both a connective tissue disorder and autism.

Parents dismissed, blamed and even ridiculed me for my "sensitivity" and "behaviour".

As an adult I tried to tell doctors but was always written off.

Diagnosed HSD then hEDS now back to HSD (Similarly...can't currently tick family history box mainly) at 39 years, severe SPD at 40 and just had the first part of my autism assessment this week, at 41.

I already literally nearly lost my life due to doctors not listening to me and had to have a massive blood transfusion (which I still haven't recovered from) 18 months ago.

I hope someone helps me soon as my body is shutting down after four decades of neglect.

Thanks for your videos Purple Ella 💜

[dewithistle]

Oh, how I relate to all of this! The journey to my EDS diagnosis after being thought of as a hypochondriac...i also suffer from anxiety, so, yeah, must all be down to that then! 🤨 Got the ME and Fibromyalgia diagnosis too, along with all the delightful gastrointestinal and joint stuff. Finally, though, I found an absolutely wonderful GP who joined the dots and sent me to a Rheumatologist because she was sure I had EDS and she was right. There's a high percentage of Autistic folk who also have EDS/HSD. My two sons, who are also both on the Spectrum, have EDS too. It sucks being on the spectrum sometimes, because i really find it hard to express myself and self advocate. xx

[simikatra]

I so relate to this Ella, 47 & the pain is unbearable now and I'm reduced to tears every other day with it. It's extremely frustrating just now as my left arm has been keeping me awake, it's so weak and I can barely use it. I was diagnosed with fibromyalgia 7year's ago, but I was extremely bendy, a gymnast, I'm still bendy but my ligaments no longer support me, and I'm constantly falling and injuring myself as a result. I was supposed to see physio for my hyper mobility a few months ago, everything is on hold. But I'm close to burn out with the constant pain, it's like toothache in my joints.

[thirdavenue]

Hydrotherapy has saved me!. I attend 4x a week. I have Classical EDS. Diagnosed at 32, first symptoms @ about 5 yrs old. Similar story of not knowing what normal was, and just pushing through. I found I couldn't walk one day, leading to diagnosis. Love the video. Keep up the good work. Blessings

[MemphisBelle]

I am recently diagnosed & cried watching this because I have been gaslighted by doctors & family my whole life. Your journey is the same as mine 😢

[ftAdonis]

Got diagnosed with Hyper mobility this week and your story is so similar to what I’ve had, from the gastro to the pain in knees, worse in right, shoulder pain, not being properly diagnosed for many years
Thank you for sharing your story to show everyone going through this, they’re not alone

[harlee]

this is the first time ive ever been able to truly relate to a youtuber. i have autism and eds too and sometimes the combination makes it hard for me to express my pain, so being able to see that im not alone in my experience is very comforting. i wish you all the best <3

[G-sc]

i exist somewhere along the hypermobility spectrum, and in my experience strength training is super helpful. most PT’s in my experience focus on stretching you out with very little effective strength training, so to anyone reading who is “””super flexible””” and experiences joint pain, this is your sign to seek out a PT who specializes in strength and conditioning

[Rinikatt]

I have hEDS as well. It's so hard to feel like it's all in your head. I'm sorry it took you so long to get diagnosed. It took me 25 years and I had to very specifically ask them to send me to a geneticist for diagnosis.

[tweetbird]

I have eds took years to find out and I feel upset about that but knowing I have it does help as I've always been frustrated with my body as my eds changed daily. I have accepted it but it has ruined my career choices, i just carry on and think positive !

[bonniemoerdyk]

Ella ...I'm glad that you mentioned painful fingers from writing! I do remember suffering a lot from that back by 3rd grade, 1963, age 8 .... even after just one paragraph. Not long after ... I realized I could pull the skin away from my elbow SEVERAL inches. Years later, In 2000-2001 I had a couple biopsies of my fingers that used to get painful reddish purple bumps the size of pencil erasers, but I would always feel very sick/run down for 3-6 weeks when those showed up. That Dermatologist said he was sure I had some sort of Connective Tissue disease. Also, everything on me has prolapsed...uterus, bowel, bladder, heart valves. Still cannot get a definitive DX, and now, with severe arthritis....age 65, cannot do the Beighton Scale test...but I could do all those things with no problem 15-20 years ago. I'm the one who started putting 2 + 2 together by googling everything I've gone thru...and then discovered thru You-Tube and Facebook others with the same symptoms. That was just January 2020, but I brought it up to my doctor, and my new Rheumatologist...and they say Fibromyalgia! I live in a smaller city about 3 to 4 hours south of Chicago, and no one seems to know anything about EDS around here....but can't travel to Chicago or St. Louis due to crippling lower spine/pelvis area. Take care!!

[galathoughtart]

I also have hypermobile elders danlos! And pretty sure I am adhd, and my eldest is autistic. I have heard these three things can cluster together, and I relate so much!

[poppyaliski]

I have an assessment for EDS Type 3 on Monday 22nd, thank you for this video!