Patient Story: Living with Ehlers-Danlos Syndrome

Took me 50 years of issues to figure out that I had Hypermible Ehlers Danlos. I figured it out. My doctors agree, but have zero education on the matter and shrug. Fortunately, I've been consuming all there is to know and doing well. Thanks for this.

Ugh, i remember having teeth pulled and being told i was just being a baby, walking around for months on a dislocated foot because I was just trying to get out of gym class, and having my daughter by c-section and being told i was just hysterical and panicked when i was screaming that i could feel them cutting. This really is an illness of torture for us.

It's so validating when you finally get diagnosed. You aren't being gaslit anymore about your pain, being told you are dramatic, exaggerating, weak. You start to believe that stuff. But when you finally get diagnosed, it tells you no, your feelings, your pain, is valid. Your daily struggle through life is valid, and you aren't weak or lazy just because you literally cannot keep your eyes open or because your wrist hurts from holding your phone! I used to run 2 miles a day in the Navy, now my knees and hips are damaged beyond repair and I'm only 28. I wish I had known sooner, but I always pushed through the pain to prove I wasnt weak. Now I can protect my children and teach them to live lives that wont rapidly deteriorate/damage their bodies.

This woman is an excellent speaker on her disease. I've learned so much.

3,5 years ago i got finally diagnosed with hEDS ... after a life time of struggles and (almost) never taken serious. At least 30 years of a lot of miss"diagnosis" ... I'm now 50years ... very traumatized by doctors and most people in disciplines like care givers, psychologists/psychiatrists ... i don't trust them whatsoever ... my pd is really a sweet one ... but still after more than 10 years i still don't trust him really ... The EDS isn't fun at all ... and it hurts ... but the most pain i've got in my life was for not being cared for and for not taken serious ... by those who are obligated to do so! Not just the so called professionals but also the people around me didn't understand and they didn't also take me serious ... because ... yeah why if even professionals don't take you serious than it is true ... you are a hypochondriac or a fake ... or it is conversion or somatization disorder ... or you just want to be sick and want all the attention and that's something you don't get ... because of that etc ... etc...

I was diagnosed with this last year at 42, it's been a devastating illness I share your pain and know it well. Blessings to you.

After reading and researching EDS and watching videos....wow this is like explaining my whole life! I'm also autistic too which I have read can be a common comorbid. And I have Crohn's disease too and many many body issues...I've always wondered why I had so many and had so many hospitalizations....it really makes sense now I also think some of us look similar I have the facial characteristics I have read about and look like I'm related to the lady in the video haha. I'm so relieved to have found out about this and I hope I can find eventually find a good doctor and geneticist.

I always got told "growing pains" @ night in my legs. they felt like a bad tooth ache or being ripped out of socket. walking as a child my feet would hurt terrible!

I was just diagnosed and my doctor never realized why I was so ill until I looked into why I had many illnesses and trauma. To this day I still can’t get access to a wheelchair. I just turned 50 and can barely walk with a walker but yet, I still don’t qualify for a wheelchair. My ankles and hips dislocate or sublux daily,, I was even born with hip dysplasia and feet deformities. I have osteoarthritis in both my knees and fell many times even broken my nose twice. I have had gastroparesia since high school, uterine rupture,arterial ruptures after surgeries and no diagnosis until 50. Even though I can barely even walk to buy groceries, I don’t qualify for a wheelchair because I was never diagnosed, doctors never believed I was in pain and said not to bend my joints because it will cause nerve damage. Today I have neuropathy as well and I still can’t get a wheelchair.

I've had problems related to Ehlers Danlos syndrome my entire life. From birth til 13 or so was extremely rough to the point I actually died on the way to the emergency room at Ike point. Fast forward today, I wasn't diagnosed until 2015 and doctors still don't know what to make of it. To make it worse, I contracted lyme disease shorty before one of my surgeries in 2012 and it the bacteria ravaged my joints for almost 2 year. More awareness of needed to educate people on rare conditions and research to help not just EDS folks but to hopefully gain the knowledge to help all those afflicted by disease. Hearing people's stories helps. I appreciate hearing your experience.

as someone with EDS, this is the most accurate representation i have ever found.

This sounds so much like me (apart from the tooth pain). I had to pull 5 teeth in a single day. I had terrible night pains, and have always struggled with fatigue. I do have some over flexibility, but no one seems to think it’s enough to give me the diagnosis. I am suffering terribly, and people think I just need to exercise more and take antidepressants. The crashes are so bad I can’t speak, walk or move when it’s at its worst. In those moments I know something I truly terrifyingly wrong.

People with EDS have been massively gaslit by the medical industry

Best description of day to day I have ever watched.

Thank you for sharing your story with me, I also have EDS and it’s very hard to get through my day to day life without being in excruciating pain and feeling severely fatigued! I work, but there’s days that I have had to leave early because my pain level has reached my breaking point, and I was just in tears sobbing as I hid in the restroom.

Oh my goodness you are making me gob smacked, never heard of this before until i made a life event on facebook saying i have Fibromyalgia, went on about the pain & a friend said i may need to check out EDS ... going back to doctors again on the 7th going to chat about this & see a second option. Thanks for sharing your story xx

Great video. It's good to see the point of view of a parent affected by EDS. I had similar experiences when I was younger only my first dislocation was when I was not even 2 years old. My mom went to pick me up and my elbow popped out. By the time I was 15 is when I think my mom started getting serious about my health problem. We went to Mayo Clinic and UCLA but no one knew what was going on with me. I was the on who actually found EDS. First I found Mafans on a TV shoe which brought me to EDS on the internet. It took 3 years but I finally got my diagnosis.

Iam so happy she made this my son has EDS and this explains so much as to how he feels , Thank you

Thank you so much for making video. EDS is one of difficult genic disorders to explain to anyone it's a silent painful disorder and you did a really good job explaining everything thank you. yov made it much easier for me to explain it to others. I was born with a cleft palate, I have four children all my children were born healthy all my children have different fathers so I know that this disorder mostly comes from my side. Three of my children have EDS. And one of them has Marfan / stickler syndrome.

Thank you for sharing. 🙏