Dancing Through the Pain of Ehlers-Danlos Syndrome
HTML-код
- Опубликовано: 3 май 2024
- Ehlers-Danlos Syndrome (EDS) affects around 1 in 4,000 people but is often undiagnosed or misdiagnosed. We meet two girls dealing with the hypermobility variant of this conductive tissue disorder.
Follow Us on Facebook: / attitudetv
Follow Us on Twitter: / attitude_tv
See more Videos: www.attitudelive.com
Made with funding from NZ on Air / attitudepictures 
Развлечения
As someone with EDS, i’m always so glad to see representation and awareness being brought to an under diagnosed but debilitating diagnosis! While I sit jn the mild to moderate range, it has changed my ENTIRE life. I went from able bodied to dynamically disabled having to slow down a lot of the ways i functioned
Here is the US the abdominal compression syndromes are being found in many EDS patients as well as renal vein and pelvic vein compressions. I myself have issues with slipping ribs compressing things and compression of nerves and veins by my collarbone. Hopeful compressions will be seen as mroe of the norm for EDS soon as I want us all to be taken seriously and be dismissed yet again. Keep dancing!
thought it was just me my ribs do this too my pelvis dislocates it’s nice hearing others stories sometimes you feel so alone i’m 49 and haven’t met many with hyper mobility EDS
Everything you’ve just said has been affecting me terribly to the point it mimics an episode of pancreatitis or gallbladder issues when affecting my sides and the pelvic floor dysfunction has sent me down flights of stairs. The compression of blood vessels and nerves in the chest also causes numbness and tingling radiating down the arms and there is just no respite from odd and uncomfortable if not outright painful sensation
These girls have amazing resilience and fortitude. Blessings for them as they continue battling onward.
29 years since my first symptom and 21 since my issues began to really become a problem, I had a physician say “This could be EDS” to me for the first time just two days ago. Though my symptoms are (blessedly) much milder and I’m thinking it’s probably going to be HSD.
I’m very glad you got your diagnosis faster than that, Tyler, though I’m sorry this disease has taken such a toll on you. I’m hoping and praying you’re able to get the treatments and surgeries you need to thrive, and soon. You deserve only good things in life: a pain free body and all the dancing you desire. Hugs!
I'm a paralyzed bilateral amputee, so I have no idea about your particular struggles but nonetheless can understand what life is like with a serious disability that affects everything. You both are resilient and have a very mature and grounded view of life. Wish you all the best, hang in there.
thankyou!! i hope you're well!
@@tylerbarnettttwishing you all the best and prayers for the ability to have the surgery!
In the US we are sorely lacking doctors who specialize in these cases. A common Dr here will first say you're crazy, it's all in your head, accuse you of relying on you tube (which actually has great info) say you are self diagnosing. Here they all say...''you would have been diagnosed by now"...(how there is only one doc in the city who knows it). Then the docs who say..."what does it matter? would it change anything?) I KNOW I'm hypermobile, my entire life, as well as my mom. They won't even acknowledge that!Money is the talker here, if you can afford a genetics specialist, money always talks. A poor patient is invisible.
I got committed multiple times as a kid due to undiagnosed EDS and autism. It genuinely ruined my life in many ways, because now I have to deal with functionally untreatable PTSD on top of it. I'm reaching the point where food just isn't worth it, but I doubt I'll be able to get an NG tube. It would make my life easier, but my US state isn't exactly known for medical advances (or even medical competence). I can't even see a geneticist because there's maybe one or two for the whole state.
Thank you so much for bringing awareness to EDS , there's many misconceptions and lack of knowledge on it. I have EDS and am from Australia it's been a nightmare and big financial drainage trying to find doctors who understand this. I really hope doctors watch this
I have hEDS and have lower GI dismobility. Thankful to still be able to eat! Their statement about how we might look like we’re having a good time but always checking in with your body in the back of your mind is so accurate. There is nothing, no moment or activity where you can forget.
Thanks for recognizing this condition. Awareness is power.
I have not heard of this. What a challenge in a life. I'm critical of social media. Now I know it has a good purpose.
I also have heds, thankfully I can eat but I did became gluten intolerant and my allergies keep increasing which I've been told is common. It's weird you get used to living with some level of pain daily, I don't think I can remember a day where something didn't ache. Thank you for sharing this.
Hi! First video I saw about this and I have the same syndrome. 🥹 it was associated with autism. Pain is really a constant issue. I have horrible head and neck pain. And I am constantly with bruises. Mental health is fundamental to deal with this situation. I hope people can talk more about this thing and be more comfortable and understanding. Just keep going ❤
I have hyper mobility EDS too it’s a roller coaster ride some days are great some not but I always say it’s a bad day not a bad life I have pain every day but don’t let it define or stop me this young lady is beautiful strong and inspiring it’s a hidden thing not many understand or have heard of we are not lazy our bodies are just physically tired plus gets frustrating when you hear you look fine your always happy when in reality you just want to hide
When I was 20 I had pretty severe digestion issues, my large intestine could cramp so intensely that my food wasn’t given enough to digest and the pain was so bad I would black out sometimes. I’ve never heard of abnormal compression prior to this. Luckily my symptoms have resolved almost entirely
you definitely should be dancing, spirit and happiness is arguably even more important than physical health because it's what gets you through those physical issues and hard times. never give up doing what you love if it's possible :) anyone trying to get you to give this up is doing you a disservice tbh. It's up to you what you are capable of, not a doctor or anyone else.
Those girls are so brave , just inspirational, I wish you to get that operation in Germany soon
thankyou!! i had the surgery on april thirteenth and i'm living my life like never before!! the surgeons are lovely too x
@@tylerbarnetttt I m so glad to hear this. God bless those genius doctors in Germany. Greetings from Italy
@@tylerbarnetttt oh yay!!!
I live in Brisbane Australia. I got diagnosed while living in New South Wales. Living in Brisbane is the worst place to live if you have eds. The resources limited nobody knows how to deal with it. I was 40 when I got diagnosed after years of misdiagnosis. I hope these two girls are doing well. The upside is that got diagnosed Young so they can start planning for their future why am I so late that I have lost so much independence since my diagnosis. The pain is horrific and every day is a battle. I recently had a fall and am now walking with a walker full time.. I wish I could go back in time and tell people what I know now
I’m from Bundaberg. I was diagnosed with EDS3 when was 21(they changed the name to hEDS about 6 months later) 7 years ago now. I lost contact with the specialist who diagnosed me in Brisbane, he was predominantly a paediatrician but had a dual specialty in genetics and had an interest in EDS. I’m trying to find a specialist again to try and get some more help as my condition has just gotten worse, now I’ve had myocarditis and they only thing that they could think of to cause that is the EDS, as well as now having pots and the muscles behind my eyes are now being effected and it has caused my eye sight to go in and out and on the worst days be bad enough that the optometrist says it would disqualify me from having a license if it was that way 24/7 but told me not to drive anymore anyway. I also have noticed some strange bladder things and sometimes trouble swallowing on top of constant sublax and dislocations and severe chronic pain. Do you know of any Specialists in Brisbane? Even if they’re not top notch, something is better than nothing at this point
I have mild cerebral palsy and few other health issues so I understand having a disability Rough but all got to stick together
Love from Bangladesh
Tyler let viewers know your gofundme and socials to help in anyway we can with surgery costs.
Women are more often diagnosed than men because men have testosterone that helps with a bit more base muscle tone which leads to less dislocations and less pain, so they don’t go to the doctor to get diagnosed. That means they are less often diagnosed not that they habe Ehlers-dahnlos-syndrome less often.
This! Along with our female hormones having a risk of further promoting joint laxity (which can get even worse with hormonal contraceptives and/or pregnancy) so females can often be more severely affected in their joints by EDS. I have hEDS and had to stop working shortly before turning 26 due to my body just crashing completely after 10 years of physically demanding education and jobs (agricultural high school degree, then worked as home help carer, a little bit of production industry and several years as a warehouse worker). Been on permanent disability since the day I turned 30 and later this year I'll be 39. I spend much of my time in bed because that's where I'm in least pain, and have been an ambulatory wheelchair user now since 2013.
I'm 100% sure that my boyfriend has EDS as well because he is hypermobile and has the hallmark skin elasticity, but he doesn't have much issues at all from his joints other than the occasional subluxation or dislocation, but he doesn't have chronic pain in his joints and muscles like I do, nor does he have any physical limitations when it comes to activities.
I'm a dancer as well I suffer from Fibromyalgia and Muscular Myopathy.
Does anyone know if Tyler has any social media so that we can follow along? Wish her all the best!
she does, she has an instagram
Id do anything to be able to go to Germany and get tested for compression syndromes. I live in the uk and have spent the last 7 years being stuck on feeding tubes, surgical tubes, TPN, everything and now my body is not absorbing anything. Compression syndromes are not well known in the uk or that’s my experience. Similarly when it starts in puberty I was miss diagnosed as having an eating disorder so spent ten months in Scotland in an ed unit that completely ruled out an ed. I’m under and intestinal failure dr however my body is no longer absorbing anything food, feed, meds, everything. My life has been on hold.. I’m living but the quality of life, I’d take one year without this over many years but still suffering. On my consultants appointment summary it says I’ve had shape studies and colonoscopies and other that all say normal despite the fact I have never had these scans. I also have MCAS and an autoimmune condition which mean I get serious anaphylaxis to so much that I’m on a neonatal feed. The cure for that is xolair injections however they have to apply for funding so I don’t know if that will help, but no dr has ever mentioned or thought about compression syndromes and I don’t know where to go or what to try so if anybody has any help or advice or suggestions I would be so grateful. I would love to afford to go to Germany but unfortunately I’d never afford it. I’m in a dire situation here so anything anyone can help with please let me know, I don’t even know how to contact drs in Germany, I know if they could help I could set up a go fund me because that would be the only way I could get there but where do I start as I don’t know how to contact a informed dr in Germany… any help I’m desperate xxx
I have hEDS as well, and while I've had symptoms all my life in the form of pain, getting easily fatigued, frequent sprains as a kid etc etc etc. I wasn't diagnosed until shortly before turning 27, by which time I had already had to stop working little over a year before as my symptoms worsened significantly when I was 25. My symptoms basically went from an annoyance I thought was normal, to being disabling and constant, and then things got even worse when being put on (more) progesterone based contraceptives for my extremely heavy and painful periods, a Mirena IUD ruined my pelvic joints for life, and at this time even over 10 years after having a hysterectomy, I'm still dealing with the issues that accelerated fast while I had the IUD (which I only had for about 7 months btw), and now it's not unlikely that I'll need at least my right SI joint fused because the damn thing keeps causing a lot of issues including randomly subluxing from me just doing minor things like putting one foot on top of the other while laying down, or get up into sitting position to get out of bed to use the restroom or something.
Extremely potent pain management is my lifeline at this point, along with the love and emotional support from my boyfriend and parents, and of course my love for them ❤
Thankfully I do not have any GI issues from my EDS other than IBS which I manage well through just avoiding or minimizing things that triggers it, and I also have some days where I just can not eat, but the latter is not a constant so it's manageable
God Ihave all sorts of pelvic floor issues years after having a Mirena IUD for the same duration as well. No one understood how and why I had so many issues and pain with it