What is EDS?
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- Опубликовано: 23 авг 2024
- Our provider, David Chorley D.O. describes EDS and some common signs to look for with this rare disease.
If you or someone you know may have EDS call us to set up an appointment for a further diagnosis and to begin your treatment plan @ (918) 943-3790 or visit our website AxisHealth.net.
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Excellent video! I have hypermobile type Ehlers Danlos syndrome, although there are a dozen other distinct types of EDS and some related conditions like Marfan, Loeys-Dietz, and Stickler syndromes. I don't have much issues at all with dislocations, but instead meet that criteria by having chronic widespread pain. The dysautonomia/POTS has been the most debilitating aspect for me. I was improperly screened and dismissed in 1996, and wasn't properly diagnosed until 2013. The delayed diagnosis allowed my symptoms to get worse, and accelerated spinal and other degenerative issues.
Hi there just diagnosed had myself pelvic pain from fall 26 years fybromyalgia 6 years check out Dan buglio pain free you there's lady cured in there called gege with eds Marfan traits it has not helped me yet though but keep hoping I git rid of pits 2008 for me it's muscle painb24)7 especially shoulders armpits others intermittent times of day
Thank you so much for taking the time to watch our video, and I am so sorry to hear that you weren't properly diagnosed. :(
I can relate with you having a lot of symptoms of EDS without dislocations
@@CameronPak me to but you will find it's the subconscious causing.the pain any OCD prior? Check out Dr schubiner tms
So glad I found this video Dr. Chorley. You were the Dr who diagnosed me with this and seem to be the only one who understands this disease.
Dr. Chorley is knowledgeable and determined to provide the best care possible for his patients! :)
@@axishealthcare1723 i miss seeing. Him. I only stopped becusse i moved further away but even my new dr suggested i make a future appointment with him. Luckily. Dr shepard at oak street health is. Smart too. Dr chorely always made me laugh. My muscies are atrophied and dr Shepard says. Its not something pt. Or exercise. Will help. I am now bedridden mostly ( dr. Shepard highly suspects ms. And says. Its more common with ehlers danlos).. itd be great to have. Dr Shepard and dr chorely both communicating . ❤ 😊
.
Well Dr Chorley was was right about my left shoulder. It definitely has gotten worse,no longer sits. In the joint at all and headed for either a salvage surgery. Or reverse shoulder replacement.. guess me and my Dr will know after my ct. Arthrogram.
All the labeling has greater impact on mental health than the wide spread chronic pain. L didn't get diagnosed until age 44, now ten years later I am still in the process of getting all the comorbidities diagnoised, it is a full time job managing all that come with Ehlers-Danlos Syndrome. Grateful for providers like Dr.Chorley many doctors all but run when they hear Ehlers-Danlos, or are dismissive or completely ignorant about it
I just saw you and am glad that I did besides your vast knowledge, ability,bedside manner and as well your personality I made the correct/smart/choice to have you see me for primary and hEDS. Thank you for everything Doctor Chorley!!🇮🇪☘️🇺🇸
I have vEDS. I was adopted, and don't have any known family medical history so I went undiagnosed until my body finally fell apart. I always thought I was just flexible as a kid, I could rest my wrists on my toes while stretching. As I entered my 20s, I started having stomach issues. I developed a stomach hernia and slow digestion, frequently vomiting food many hours after eating. Then ALL of my pelvic organs prolapsed. In my 30s my shoulder started slipping out of the socket, my fingers started to dislocate frequently. My teeth started to loosen and break easily. I'm approaching 40 now and my neck is unstable, my ankles have become unstable, and I keep having extensor tendonitis in my wrists and feet. I tore a tendon in my foot last month just from standing on my toes to empty the washing machine. My veins in my hands and feet regularly rupture out of nowhere. I had a massive hemorrhage a few years ago that nearly killed me. That was when I was finally sent to a rheumatologist, and a geneticist. I have Vascular EDS and I can expect to have a "major event" by the time I'm 45. I'm scared. It's so much more than just being flexible. 😔💔
I hope you receive the help you need, and I am really sorry you are going through this. :(
So sorry to hear this @emptylotionbottle ... my prayers go out to you. I pray for your wellbeing, physically and mentally!... lots of love ❤
Hi, I read your story. I think I have EDS too and I’m waiting to get tested. I feel your fear in your comment. I’m f’n terrified myself with my health issues. I hope you’re handling things okay. I just started to crochet and it’s doing a really good job distracting me from my fears. This summer equals another operation, this time on my hips. I’ll be making lots of potholders to hopefully numb myself. Anyhow, I hope you’re doing okay. 💙💙💙
I have EDS I have so many medical problems from it gastroparesis, Atlantoaxial instability, POTS and extreme joint pain, immune deficiency, mal absorption and many more. EDS is horrible I can't even work. Many days I am bed bound.
Is there a test for malabosorbation I have had fybromyalgia pots now ok but muscle pain si very hard tryedldn?
That’s so awesome to see that there’s a good doctor and you know what EDS is, let’s me know that we can rely on at least one good person. Too bad you can’t teach all the other doctors about it. I have EDS, and I don’t think any of the doctors at our hospital knows what it is. I doubt my PCP would know what it is. Luckily my Neurologist knows it and so does my OB- GYN.
My hEDS has been confirmed by specialists but my GP doesn't believe in EDS so she doesn't formalise the diagnosis. I've been tested for POTS but didn't have any issues with my heart during testing. My ankles are so instable I've twisted them many tines. Never dislocated anything though. I've fallen and hurt myself badly on many occasions. All doctors ask is if I was drinking (I don't). I'm fairly certain that we have this in our family, just that no one is diagnosed. It would explain so many health issues.
To make matters worse, I also have endometriosis and ME/CFS. Make a guess why no one takes my EDS seriously. Not even when I bend my fingers beyond 90° or have places with very stretchy skin, or conplain about all the pain in my joints. My GP just gives me more antidepressants like that's the cure all.
Same as myself it's related to Asperger's mhtfr gene my mother has it severe ms my grandfather had it born with one eye working but amazing he got to 85 pain free even though he had slipped disk got over it.did get Parkinson's nsos in the end though.midley most if us have OCD from birth had to connect the dots myself
My uncle was one of the first Diagnosed patients in the UK with EDS He was born in the 1940's and suffered many health problems. Unfortunately he did not make it into his teen's
What kind did he gave sorry to hear that
I am so sorry to hear this. :(
Someone who has EDs recently asked me if I have it too because she noticed I'm hypermobile. I always thought I'm just really flexible. My mom used to yell at me when I sat on the floor with my legs like a W because it's bad for your knees. What this person told me is it's a spectrum and can be different for everyone. She asked me about any other weird medical issues I might have. I have Renauds syndrome, extreme myopia and a sensitivity to acetominaphin. I've had knee pain at times, but I've also done a lot of sports that can lead to knee injury, so I've always blamed that.
I wish your practice was somewhere I could get to. It's SO difficult to be taken seriously in Australia. Nobody listens.
Michelle at Be Your Best Physiotherapy in Cranbourne, Victoria, knows lots about EDS. She’s been incredibly helpful for me.
@@user-qr7ej8zn2v Thank you! I'm about to start looking for a physio, so I'll give them a call :)
I'm so glad to share with you my experience on how I got rid of my EDS with dr imenherbal herbs on RUclips channel. No more chemo. am completely free. Thanks Doc. ruclips.net/channel/UC1PVLGW
Appreciate what you do! Thank you.
I really need to go back to Chorely. I am much sicker than I was last I saw him, and wheelchair bound now.
Excellent information. I am so grateful that there are some medical people who actually believe it exists and how debilitating and difficult it can be. Thank you for sharing this with us. Thank you for caring for 🦓 ZEBRAS GENETICS 🧬.
I wont see anyone BUT. Him.. the puzzle. Is making sense now and I'm glad I moved to. Tulsa ok.
I'm so glad to share with you my experience on how I got rid of my EDS with dr imenherbal herbs on RUclips channel. No more chemo. am completely free. Thanks Doc. ruclips.net/channel/UC1PVLGW
Calling asap for an appointment with you! Thank you for sharing this information.
My mother has it and I was diagnosed with it at 7 years old, For a long time I was told not to do many physical things such as do not swim do not climb a ladder or do not carry anything heavier than a gallon of milk and I believed it but I was in pain constantly and I decided to take things into my own hands and start exercising and eating right and while I still live with pain every day it's a lot less than it was when I was actually following doctor's orders as you the younger kid
If I weren't about to move back to Seattle, I would be making my appointment with you! I now have all my dx's, but zero treatment except pain management. I'm don't fighting with Texas medical "care".
I remember walking out of my diagnosis smiling and crying cuz finally I wasn't crazy 😭😭😭😭
Thanku for what you do
How can I get a stable Diagnosis for this, I've been getting surgeries for over 4 years now. And I'd just like to mitigate this pain.
i have hypermobile type
Same
Wish you were located in New Jersey. Have yet to find an excellent primary care dr who understands me.
My biological father died from EDS (mitral value rupture) and I also have EDS and significant issues. This video makes me feel really heard and understood. My GP is really truely wonderful and I'm so lucky he has taken the time to understand my condition, and you're correct they only have so much time and we have a lot of comorbidities (EDS, pots, mcas, etc). This is the best explanation of our disability I've ever seen. Thank you. Also, do you happen to take on board Australian cases or reviews.?
I wish I could get help for me and my 2 daughters, we are all suffering with EDS
Thank you for the video, I am looking into myself having a diagnosis, for myself but mainly for my daughters as I feel they need to be assessed. Even my son has a few symptoms. I have only just found out about this and when I check I tick most of the boxes it made me cry. As for years I have tried to figure out how to live With this..
I know for a fact that my auntie has this to.
The main thing was about my skin as it never heals properly. I have scars that are very old but have not faded.
I am 57 years old and my joints hurt, so having some physio might help.
I had a blood test the other day and my arm is just covered in bruises. They couldn’t take the blood as my veins kept bursting and I have bruises all over my arms. I have a feeling it has something to do with EDS.
But mainly it’s the tiredness, it is just ridiculous how tired I get and embarrassing, I am always trying to stay awake.
I wish I had been diagnosed much more earlier in my life. It would have made sense with everything that I had going on in my life, not just for me but my kids I would’ve been able to help my children more and been more understanding.
They will all get tested as soon as I have.
I was the family clown, in a nice way of course, I was the grandchild that could make my body do the most odd things and they called it the crab as I could Crouch down and put my arms behind my back and hold my hands behind my back and walk like a crab.
My knees are so bendy they look like Iv broken them, but 57 years down the road it’s not funny anymore it’s painful and I find it hard to walk far.
I am 63 but when I was a young girl I had night time pain in my legs especially my shins and when I would run my ankles would give out on me. It was very painful. Anyway, the doctor just told me it was growing pains. Later on I noticed that my twin brother could touch his thumb to his wrist and I could do it but not as well as he could. Since that time I have slipping rib syndrome and two great Toes that go out of joint I need it goes backwards sometimes. So I am going to the rheumatologist and see. I already have Sjogren's, arthritis, and am old blah blah blah. Lol
Sounds like me as a child
Please! I have called all of the online numbers. and have been discontinued.. I truly believe you can save my life at this point
. I live in arkansas... there is knowhere to go.... and im in great medical distress!
Hello, please call (918) 268-6558 and I would be more than happy to talk with you.
I wonder if. Having a neurogenic bladder is also. Part. Of ehlers danlos? Hmm.
Thanks
Wait-is it not common to twist your ankle or mildly strain it because you stepped funny?
It happens to me when I just walk normally now that I'm in my 40s...
Me to had it all my life though upper body pain is the worst
Who can best diagnose me in BC Canada. I’ve been suffering over a year now.
I'm so glad to share with you my experience on how I got rid of my EDS with dr imenherbal herbs on RUclips channel. No more chemo. am completely free. Thanks Doc. ruclips.net/channel/UC1PVLGW
I’ve been waiting 15+ years for a diagnosis in the UK
ruclips.net/channel/UC1PVLGWeT3a6Cto-kOD9IfQ
Meeting you was a life changer Dr imenherbal on RUclips for curing my daughter from Hemangioma I'm more than grateful
My son was diagnosed with it
I'm so glad to share with you my experience on how I got rid of my EDS with dr imenherbal herbs on RUclips channel. No more chemo. am completely free. Thanks Doc. ruclips.net/channel/UC1PVLGW
It's just today the doctor told me I have this..... 😂
In the past 25 yrs, everyone told me it's just because I have flexible body
Grazie 🤩
Interested in to how this would affect a woman's reproductive system? When I gave birth to my first as a twenty year old it gave me terrible pain back for 11 yrs now and I was on bed rest think best someone call tell me is that I was very loose from the hormones and it made the disc sip
From what I know endometriosis is a very common comorbidity of EDS, but I do believe it can have other reproductive effects
What the NIH said was that hEDS causes women to give birth quickly once it starts and that we are a little more susceptible to preterm labor. Other types of EDS have other issues, the hypermobile type isn't too bad, almost normal. I can verify this, I've given birth three times, all before I knew I had hEDS.
Also just wanted to be very clear that being able to do double-jointed (hypermobile) party tricks is a sign of EDS, but you do not likely have this condition if you have not clearly inherited it and you are not experiencing medical problems because your joints are extremely hypermobile (like dislocations or sprains without a prompting event that would cause these types of injuries to occur in a typical person) and the medical problems are occurring in multiple joints in your body. There are other conditions that can cause this double-jointedness that aren't necessarily inherited, like benign joint hypermobility (which is typically what causes this if you are not experiencing medical problems because of the ability to move any number of your joints beyond a typical person's range if motion) and there are also localized types of hypermobile joints (meaning that only one or a few joints may have a greater than normal range of motion), and generalized joint hypermobility which can cause medical problems too but this isn't necessarily genetically inherited and the word generalized means that this extensive range of motion occurs in most, if not all of the joints in your body.
EDS can also be DeNovo meaning you're the first one and you did not inherit it from your parents
@@isabeldejesus1924 yes, this is why I said "probably" and "likely"
This comment is false
@@MrsPaulaTorres how so
Yes! It's definitely WAY more than just being "double jointed". I always thought I was just flexible when I was younger. I was adopted and don't have a family medical history. as I entered my 20s, I started having stomach issues. I developed a stomach hernia and mild gastroparesis. Then ALL of my pelvic organs prolapsed. In my 30s my shoulder started slipping out of the socket, my fingers started to dislocate frequently. My teeth started to loosen and break easily. I'm approaching 40 now and my neck is unstable, my ankles have become unstable, and I keep having extensor tendonitis in my wrists and feet. I tore a tendon in my foot last month just from standing on my toes to empty the washing machine. My veins in my hands and feet regularly rupture out of nowhere. I had a massive hemorrhage a few years ago that nearly killed me. That was when I was finally sent to a rheumatologist, and a geneticist. I have Vascular EDS and I can expect to have a "major event" by the time I'm 45. I'm scared. It's so much more than just being flexible. 😔💔
By who though? Who do I get seen by? What kind of doctor will take me seriously?
Hello! I am not sure if you in Oklahoma but if you are not we also have Telehealth appointments with Dr. Chorley. For more information go to axishealth.net/eds-syndrome/
Thank you, Sir!😊
This 😭
Ohhhh crap......
Could there be causes for this? Vitamin deficiency or general diet issues? Seems like a strange disorder with no real research
I think it's got a lot to do with genetics
It is a genetic issue, meaning you are born with it. Nothing you can do to prevent it, but manage it.
It is entirely genetic, and this has been proven. There is no cure, and the condition can effect people in many different ways. All we can do is manage the symptoms, which is easier said than done.
@@brandon3872 sounds fake tbh
@@Elm98 There is information available if you are interested in learning more about the condition. Plenty of research has been done and scientific papers have been published. If you are just trolling, you could be spending your time doing something productive.