Our Pain is Real: Ehlers-Danlos Syndrome Awareness
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- Опубликовано: 8 сен 2024
- Thank you to all the courageous individuals from around the world who so openly shared their stories in hopes of raising awareness during Ehlers-Danlos Awareness Month 2021. The individuals' full videos can be found here:
drive.google.c...
More information about EDS here:
www.ehlers-dan...
"The EDS Toolkit:" www.rcgp.org.u...
UK: www.ehlers-dan...
DE: www.ehlers-dan...
NL: ehlers-danlos.nl/
Video directed by / @celinakobetitsch2884
Produced by / @jaymiemoon9963
This was wonderfully made! Thank you all for sharing your relatable stories. I was diagnosed at 44, after reading a post on an unrelated Facebook page.
I was diagnosed at age 48. With EDS, Classical type.
Having to diagnose myself with EDS was one of the most difficult things for me to do. Having multiple system issues that seem to have no cause... discovering that my poor healing, easy bruising, and constant dislocations are caused by faulty collagen production... helped me take care of myself better. My uncle just told me about other family members with similar issues. He's a doctor and just learned about the condition.
I am a physical therapist & I have so many patients with EDS. Most also have POTS. We are doing a training for our therapists next month on this and I plan to show this video. @hqhtherapy Thank you so much!
I’m looking for a pt and can’t find one anywhere who has even heard of EDS. What state r u in and do u do telemed?
@@anntunaley9974 I’m in CT & NY and yes, I do telehealth.
I know exactly what these people are going through. I have the condition and at 16 the condition worsened and I had to leave school and college. I’ve never been able to work & it’s deteriorated so much that I’m wheelchair bound and in supported living. I’ve had drs misdiagnose, not believe me, tell me it’s in my head, that I’m just complaining etc. I had to find the diagnosis myself to present to a sr I finally found, was a good one. Family & friends have left & rejected me. It’s taken over my whole life. Things need to change: it’s 10 years later and things have deteriorated rather badly. But we must stay positive and stay strong. We must continue to fight for equality and for awareness !!!
@@christinagiovannini4914 never heard of them to be honest. What are they?
Thank you!! It's nice to be reminded that I'm not alone!
This community is amazing.
I've been really sick for a decade, lost my vision, tons of pain, severe painful swelling, massive GI issues, and all kinds of other painful symptoms I didn't know were even possible until i experienced them. I've had 10 years of wrong diagnoses, and therefore wrong treatments, including 2 rounds of chemo. I also have a rare form of mastocytosis, so I have anaphylactic type reactions often.
Anyway, very long story short, one of my doctors connected some dots and mentioned Vascular Ehlers Danlos Syndrome. I started researching it and it finally answers all of the unanswered questions and explains nearly my entire medical history since birth. I'm certain I have EDS, but waiting for the test to come back to find out which kind.
I'll be honest, I'm in so much pain and in such bad condition, at this point, that I hope it is VEDS; just because I read it's rare to live past 50, and I'm 46. I'm ready to be done. I'm doing whatever I can to get from day to day though, just hoping if they finally have the correct diagnosis, they'll give me some relief. I have no qol and the only time I leave the house is for doctor appts and even that has been impossible most days. I have an acute illness, on top of my regular stuff, and blew out 2 already herniated discs last year. I had surgery scheduled but had to put it on hold when they decided they think I have vEDS.
I truly hope no one reading this is going through what I'm going through. If so, I hope you get some relief soon!!
I just happened upon this almost 2 years after I wrote it. I can tell by how it’s written, I was in bad shape. A month or 2 afterward, I had a subarachnoid hemorrhage I shouldn’t have survived. I had to relearn to walk and talk, etc. I wonder now, seeing that previous post, if I weren’t having symptoms prior to the big rupture. It is now confirmed I have VEDS. (I also know a lot more about it than I did at the time I wrote the previous comment, which was next to nothing.)
It's so wonderful to read your update from your initial comment. I only stumbled upon this video today and am struggling with similar thoughts to your first comment. I have so much to be grateful for, with wonderful people in my life, yet, the suffering is exhausting. We just keep going don't we, with hopes better days are ahead.
@@Christianna271 I feel the same way, Christiana. The constant chronic pain and other very painful, disturbing symptoms are so grating, you just wish everything would stop for a second and let you take a full breath. I’ve been fighting through day by day and sometimes minute by minute, for so long, sometimes I don’t know if I have any fortitude left. Then I think why am I suffering through this day after day…for what? To do it again day after day, when you have little to no control over it? It makes you feel like a burden in every way at times. Not to be a downer, it’s just reality for so many of us and I think it actually helps to talk about it. We need and deserve to be able to get out our frustrations with being chronically sick. I hope you are doing well with coping with yours. I know for me it’s an up and down battle these days, but hopefully we can both find ways to release and get relief. 🥰
@Rls_0523 Beautifully said. All of this!! I've read about some people with EDS looking into assisted dying, and I don't blame them. This condition is relentless and we do our best to manage. Talking frankly about the reality of it helps. Although it sucks so many of us feel this way, I appreciate that we can relate. Thanks for connecting ❤️
Thank you for making this video I wish the whole world could see it most of all all the doctors in our life to help them understand EDS
Wouldnt that be wonderful! I’ve been sharing it like crazy.
I cried to finally all of it made sense and all of the pain in head stuff
I promise you’re not alone 🤍
So did I, then my Dr looked at me and told me I was depressed! I was so mad!
@@theresamusgraves9593 uggghhh! It’s so frustrating.
Love being a part of this. I couldn’t imagine where I’d be without this community. RUclips has been a great guide & outlet for me. Thank you for creating such a great video.
I have EDS and I’m always in pain! I have the Classical type. I have GETD, Chronic Fatigue and MCAS which is the reason I have a high allergy to certain medications, I am starting to develop symptoms of POTS& Dysautonomia. I shouldn’t be chastised for being too slow or too sensitive to people’s horrible attitude towards me and the fact that I have to use a mobility device. I am a housekeeper at a bowling alley, I am a Lutheran who tries to love my neighbors as God calls me to, I am happy, and I have days that I can work at a fast pace but there’s always going to be days that I can’t. Please be understanding and patient with all of us. Please do your research and learn something about EDS, and maybe you will see life through our eyes!
Thank you for helping share our stories!!
Now i know. Good work!
God bless
Incredible! My daughter has it and sending to her so she knows she is not alone and others have similar experiences
Thank you
That little girl made me cry I mean all of it’s super relatable from the drs not believing u to ect tired all the time. When the geneticist finally told me I had in at 36 tho I suspected. I’m about to try acupuncture
Thank you for making a video I can show my doctors ❤️
I’m 38 and currently 27 weeks pregnant. I can’t help but feel already a failure as a Mother that I very possibly could pass this horrendous disease onto my daughter. I pray every day that God will have mercy on my child and knit her together without EDS.
Even if she has it, there is a lot you can do to minimize her issues. It can make a huge difference to know the Dx right away. I probably wouldn't be severely disabled if I hadn't pushed through the pain & severe symptoms for years on end because I had no diagnosis, & thought I had no "excuse" to act sick.
Thank you for this video !!!
Excellent. So true and relatable. Ty for making this 🦓🦓🦓🦓
It should honest to GOD be made a Crime for doctors to gaslight patients, deny their pain or say it's 'psychological' ...they should lose their license if they emotionally abuse patients or refuse pain intervention to a presenting patient! It's okay for doctors to 'not know', it's Not okay to say to someone suffering it's their fault and they 'are crazy imagining it' or lying..
I am SO TIRED of being told there is nothing wrong with me... I am 50 and for the first time in my life, I called an ambulance yesterday because of severe pain in my chest and numbness in my hands. I was worried about a heart attack... the only response I got from the ER was 'everything checks out, you are good to go'.. and here I sit IN SEVERE PAIN AND CRYING and every time I try to talk to a doctor, they dismiss it. The depression and suicidal thoughts are a constant thing every minute of the day. My family thinks I'm just making it all up. It's so exhausting just trying to get through the next hour.....
Thanks so much for this video
I’ve had weird issues since I was little. I wasn’t formally diagnosed (genetically) until age 40. I have, imho, a milder form of ED than many others. But I have had 4 heart surgeries, three Osteotomies, 1 shoulder repair and going in soon to get my other shoulder reconstructed. But I still function very well. The daily pain, as I get older, is very real and challenging.
This is awesome💕
I was wondering if you could pm me the steps you had to take for Social Security disability please
Lauren?
En Français ..........ok Merci
Bonjour ! Est-ce que tu as trouvé les sous-tires françaises sous la vidéo ?
Water is magical to me also. If I could work from my hot tub it would be ideal 😁