What is EDS?

i have hypermobile type

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.

Thank you, Sir!😊

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.

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.

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".

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

Appreciate what you do! Thank you.

Wish you were located in New Jersey. Have yet to find an excellent primary care dr who understands me.

Grazie 🤩

Wait-is it not common to twist your ankle or mildly strain it because you stepped funny?

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

Who can best diagnose me in BC Canada. I’ve been suffering over a year now.

This 😭

Could there be causes for this? Vitamin deficiency or general diet issues? Seems like a strange disorder with no real research

Thanku for what you do

I wish your practice was somewhere I could get to. It's SO difficult to be taken seriously in Australia. Nobody listens.

Thanks

My son was diagnosed with it

I wont see anyone BUT. Him.. the puzzle. Is making sense now and I'm glad I moved to. Tulsa ok.

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

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 wonder if. Having a neurogenic bladder is also. Part. Of ehlers danlos? Hmm.

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 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.?

Ohhhh crap......

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!!🇮🇪☘️🇺🇸

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.

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 wish I could get help for me and my 2 daughters, we are all suffering with EDS

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

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.

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

I really need to go back to Chorely. I am much sicker than I was last I saw him, and wheelchair bound now.

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.

By who though? Who do I get seen by? What kind of doctor will take me seriously?

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!

Calling asap for an appointment with you! Thank you for sharing this information.

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.

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 🧬.

This video is a commercial. Don't get your hopes up by this group as they will only let you down. they will be more than happy to set up and appointment get yours hopes up and then crush those hopes like a useless tin can. they are not the caring nice doctor that actually understands EDS like he says. What they are is yet another health org that will be more than happy to destroy your hopes and leave you with no more than you had before contacting them. They prove what most of us already know. People with EDS are a lost cause, and unless the situation exactly meets the needs of the doctor not the patient he won't even speak to you, even if he has already made the commitment to do so. do your self a favor skip this one, and move on to some other doctor that seems to offer hope, because unless you fit exactly in this guys mold, then you are not even worth talking to.

I remember walking out of my diagnosis smiling and crying cuz finally I wasn't crazy 😭😭😭😭

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