What is Ehlers Danlos Syndrome?

What is Ehlers Danlos syndrome ( EDS )?

In this video I talk about what Hypermobile Ehlers Danlos Syndrome (EDS) is and how it affects my daily life.

hEDS is a chronic condition, affecting the bodies connective tissues, which causes chronic pain and fatigue as well as many other issues. Just having hypermobility does not mean you have EDS as it is a genetic disorder which causes you to have faulty collagen and there's a lot more to it that just being bendy. We call ourselves medical Zebras and together we are Zebra stong!

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[HeyJudie]

I crack super loud too, omg. I'm fellow heds and I relate to everything you said, only I haven't been able to sleep lately. I'm also in severe pain 24/7 and I have certain joints that are injured often. I'm looking into getting an electric wheelchair for when I go out because I have such a hard time walking or standing for more than ten minutes. I'm scared insurance won't cover it. I've tried other mobility aids but because my shoulders are most often injured by the slightest bit of use I will need something that I don't have to carry around with me (and actually a chair will carry things for me, also very needed). A lot of people don't get it and so I'm always glad to run into people who do. I liked and subscribed

[pamelahayward]

Hi Jenni. Great videos. I am like your mum. Had diverse health problems all my life, diagnosed with the usual growing pains, my childhood GP treated me for flu for 8 yrs and, when my knees became totally unstable at age 12, I was told I had bone fatigue and had physio 3 times a week for 4 played havoc with my education. Anyhow I was finally diagnosed with hEDS in February (I am 52) and was diagnosed with POTS 2 days ago (I have spent the last 4 yrs having tests for epilepsy, diabetes, brain cancer etc and was even told it was panic attacks). Now the next step in convincing my wonderful GP (a different one who actually listens and told me that I am the specialist when it comes to my body) to consider my theory that MCAS kicked in at age 12 and caused all my allergies etc. I think he will listen because, after being treated like a hypercondriac by the medical profession for so long, my theories are proving to be correct. My siblings children (mainly the girls) and their children (also mainly girls) are also being diagnosed with connective tissues disorders. I have 3 sons and they have some issues too but I have noticed that, especially amongst the males, there is a higher incidence of Aspergers type disorders/behaviour so that is my next area of research. After all there is connective tissue in the brain. In fact the corpus collosum, which is the site that causes the problems in people with Aspergers, is what connects the 2 hemispheres of the brain hence connective tissue. It would be interesting to find out the if other families with EDS also have a higher incidence of members with Aspergers.

[peachy]

I’m super late to the party here but I’m so glad I found this video, I’ve been diagnosed with POTS recently after dealing with symptoms for most of my life and not being taken seriously by anyone, and now that I’ve finally been diagnosed instead of pushed to the side we’re trying to figure out why it’s happening. I brought up hEDS at my last appointment with my cardiologist (the one doctor who even knows anything about POTS in my area) and he completely ruled it out without even letting me explain my symptoms, which was pretty frustrating. I have hypermobile joints for sure, have had chronic pain especially in my knees for most of my life (it got to the point where I needed a brace all the time and could barely walk on my own because it hurt so badly, and I had to go to physical therapy for a long time before getting any relief at all), it takes ages for my skin to heal after even so much as a scrape, and every tiny little scratch turns into a scar after taking 3+ weeks to heal at all. I’ve always been covered in unexplained bruises and marks and had joint pain all over, and it’s gotten worse recently as my POTS has gotten worse as well. I really think hEDS fits me, but especially being a kid doctors don’t take me seriously and don’t bother looking into anything before shooting it down without listening to my thoughts. It’s insanely frustrating and I hope others dealing with these things are taken seriously and get some relief. People need to realize that invisible disabilities are just as hard as visible ones and need to be taken just as seriously.

[zoedyer]

Hey Jenni.Great video nice to see someone raising awareness of eds.
From a fellow Essex girl who probably has eds/Generalised joint hypermobility spectrum disorder.

[katkaplan]

❤️🦓 fellow zebra here, just recently (after a 9 month genetics appt wait), 3? Years suspected I had Eds, and over 50 years living with the pain and all the comorbids - pots, gastroparesis, mcad, etc etc..

[sparklebee]

My daughter who is 11 told me she is tired of hearing about all my problems. I’m 37. I hurt everywhere all the time.

[ferideorman]

Hi Jenna,
Great video, i just had a question. Is there any medical/lab testing that is done to confirm it is ehlers danlos or did your doctor just pick up on certain symptoms you were experiencing. Thanks :)

[treelore]

The thumb position you showed is totally normal! meaning the way your thumb hangs is the way all human thumbs hang. Check with some friends you will see the normal profile is relaxed just like your hand :-)