Patient Story: Living with Ehlers-Danlos Syndrome

This is the full interview with Pippa, sharing her experiences living with the rare disease Ehlers-Danlos Syndrome (EDS). This interview was filmed as part of Findacure's crowdfunding campaign, raising funds for rare disease patient advocate support.
If you would like to support our work with patient groups, why not donate to Findacure via uk.virginmoneygiving.com/chari...

[@sofroc5496]

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.

[@ElizabethMillerTX]

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.

[@kimberlyschwartz5299]

Hi Elizabeth!! We are TWINS & I am in the same boat as u are!!! I have had symptoms all my life of EDS, fibromyalgia, horrible headaches and a chronic horrible sleep disorder. Every doctor I've ever seen has no knowledge of EDS so therefore they don't know what to do to help me. I live in such horrible pain especially after exercising!! Working out used to be my life & my saving Grace, it was the ONE thing that would ALWAYS help me to get manage my pain..but, at age 45, that changed And now (I am 52) all it does is CAUSE me pain. I would love to get in touch with you and share our stories with each other, I'm also going to start a KZbin channel about living with undiagnosed EDS. I would love for you to be part of it! Please get in touch with me!!

[@bridawson8749]

@@kimberlyschwartz5299I think WE might be twins😬I’m 43 & KNOW I have it(I even completed the new/updated, more in depth, test that’s used to diagnose HEDS & the results were undeniable)but my anxiety has made it almost impossible to book a doctor appt. As of now, there’s no genetic markers to help the average practitioner diagnosis someone with H-EDS. So it’s all too easy for me to imagine being shuffled from doctor appt to doctor appt without learning anything substantial💆🏼‍♀️ I’m going to see if I can find a rheumatologist in Jax FL who specializes in hyper-mobility disorders & if I’m successful, I’ll definitely bite the bullet and make the long dreaded appointment🤞🏻 I was a gymnast & a dancer in my youth & teens, and become a Pilates & yoga instructor in my 20’s, so I SO understand what you mean about working out! I NEED to workout to feel mentally & physically stable, but for the last 2yrs or so I feel oddly drained after a solid workout. It’s totally inconsistent though. I’d say that the odds of me feeling worse after a workout is about 50/50. I own my own Pilates reformer now, and every time I walk past it I torn. Will working out make me feel better & give me energy, OR will it leave me feeling hungover for the next 24-48hrs. And it BLOWS!!😥

[@vivalaleta]

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

[@ThankfulRain]

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.

[@wuqueenbee2852]

This is literally me too!! Diagnosed at 50 C-section no working spinal block.. have to put me to sleep for dental

[@Nickandevansmom1]

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.

[@kimberlyschwartz5299]

Hi Tammi..I know u wrote your comment 5 yrs ago but I want to know how u are doing these days?? I'm going to start a channel discussing "Living with undiagnosed EDS"...u are invited to come!!

[@TechnicallyJustin]

Hope you are well. I have type 4

[@Rebecca-1111]

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!

[@bellavitarox7442]

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.

[@eternal1635]

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.

[@boeiing747]

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...

[@RubyWilliams-fq7kc]

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

[@shannongreenwell1278]

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.

[@joanneduval5532]

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.

[@Dulcimerist]

Sorry you aren't getting the equipment you need. Which country are you in? Perhaps a local charitable organization would help. Do you have vascular type Ehlers Danlos syndrome? The ruptures sound like one of the more dangerous types of EDS.

[@joanneduval5532]

@@Dulcimerist Hello, I’m from Canada and as per my recently previous family doctor, she said I didn’t qualify for genetic testing because I’m in my 50’s and I did have 2 children. My daughters who barely survived birth. My cervix was too weak, my son passed away at 24 weeks gestation because of placental detachment and a few miscarriages. My doctor said not to waste resources because I already had my children

[@theangrytiredzebra]

​@@joanneduval5532that's so horrible. I'm so sorry. 😭

[@viviengiannacaple-chuley4408]

Best description of day to day I have ever watched.

[@richaewilliams9694]

I agree

[@Wolverineeeeeeee]

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.

[@smoon52170]

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.

[@nicolaxoxo1]

Is that the 4th child who has Marian’s or can a person have both EDS and Marfan’s?

[@lauriepanzicabeal7566]

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

[@emilymaule1858]

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

[@jackiesicilian5720]

How did it work out?

[@allinaday9882]

The “crash” from overdoing it, sounds exactly like ME-CFS fibromyalgia. Now there is an equivocal test for ME-CFS, I wonder how many who find themselves negative for ME-CFS actually have ED.

[@lbopp8661]

Thank you for sharing. 🙏

[@ryanhoward5516]

one of the few testimonials that include the crash....most people don't understand but often eds push their selves over the edge going to far will cause a kind of breakdown where a kind of psychotic break occures from mental or physical stress like sleep deprivation over periods of losing sleep in eds trying to live feels like a forty hour work week in one day pushing past pain so much without sit down rest ignoring body ques and self care your body reboots and will force a rest and you have no choice likely end up in the hospital where you can rest under drug induced sleep typically high dose sedative of sorts a flare often causes spasms going beyond a flare will make you ill feels like the flu going to far can be like heat exhaustion vomiting dizzy your muscles seize and hurt your body will force you to rest regardless if you have things to do or not

[@phaedralee2681]

Excellent description!!

[@Mel-oe3dw]

People with EDS have been massively gaslit by the medical industry

[@WanieB]

My daughter got her handicap placard in college. She had so many days she couldn't walk, swollen joints and sleep all the time.

[@ritz6982]

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.

[@jeansaben9954]

thank you

[@sparklebee545]

This is me 100 percent and I’m 37. I am currently dealing with my husband’s family wanting me to care for an elderly member of the family with dementia and my moms side of the family trying to have me care for my grandmother who is 81 with Alzheimer’s all the while I’m caring for my own 5 children I chose to have. I’m in constant pain and am fine with caring for the five children I chose to care for but the two elderly people in both families, there is absolutely no way I could possibly care for them and either side of the family can seem to understand that since I’m young but my mom and her siblings should care for their mother and one of the other family members on my husband’s side should care for the other elderly member of the family but they all want to dump them on me who can barely walk and am shopping for an electric wheelchair because of my pain.

[@Dulcimerist]

Sorry you're experiencing that. It's bad when relatives make assumptions of our capabilities and force commitments upon us that we cannot keep. If you're in the USA, I recall some sort of tax credits or stipends are available to people who provide in-home care for elderly family members. If something like that is available, perhaps you could pay someone to give you a hand. Are they wanting to have the elderly family members move into your home, or are they expecting you to drive to their homes? It sounds like a bad situation.

[@kathleenwharton2139]

Say Yes when you mean yes. Say No when you mean No. be Kind But True! From Jesus! 😊❤

[@LeftOfToday]

Everything she's said is me to a T. I had a similar experience at the dentist except it was just for a cavity fill. Poor her! I'm afraid of dentists to this day. I think ibuprofen is the only pain medication that works for me. I've been working in childcare but it's just too much for me now, and I only got my diagnosis recently even though I suspected it for the past decade.

[@cammieksandi]

I really really want to watch this video but my volume just isn't loud enough. Perhaps I can just listen to it without watching, with my mobile up to my ear.

[@erinancientelements]

I stopped getting the expensive "numbing" injections with fillings. The dentists thought I didn't feel pain at all, but i figured why PAY for something that doesn't work anyway? Walking epidural with my child, nadda. The docs told me i just didn't register it working..... 🤔 Why bother then??? What's the sense???

[@ramlinshoes]

Seems so difficult.

[@Stillwater1967]

It’s in our DNA

[@annettecantu3826]

Is there any hope or treatment?

[@Lionessliving]

Ldn low dose naltrexone

[@hbic3]

A what kind of jaw?

[@AJ-lm5rh]

Over crowded

[@unconditionalsurrendertell9826]

We couldn't possibly be helping mds work 24hr shifts

[@cammieksandi]

I really really want to watch this video but my volume just isn't loud enough. Perhaps I can just listen to it without watching, with my mobile up to my ear.

[@allinaday9882]

Push the”CC” square on the top of the screen , on the right side to be able to read what is said, while it is being said. Sometimes you have touch the 3 dots on right, top of the screen to see the choices. Hope this helps.😊