What is Ehlers Danlos Syndrome?

What is Ehlers Danlos Syndrome?

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! For more information please visit www.ehlers-danlos.org and for the new diagnostic criteria please see Ehlers-danlos.com Music Credit: Don Perez Freire performed by Edson Lopes https://creativecommons.org/licenses/by/3.0/ If you liked this video please subscribe to my channel :) You can also find me on other social media: Blog: 1nvisibl3girl.wordpress.com Instagram & Twitter: @1nvisibl3girl Email: 1nvisibl3girlJenni@gmail.com Facebook: 1nvisibl3girl
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Рейтинг 9.3 из 10 на основе 1287 оценок и 1287 отзывов.
Pamela Hayward
Pamela Hayward
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 yrs.....that 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.
Jenni Pettican
Jenni Pettican
Hi Pamela, Thank you :) Oh wow, sounds like you've had an incredible journey, I'm glad you finally have some answers! x My POTS was also put down to anxiety and panic attacks at first. Doctors also told me there was nothing wrong and they started to be a bit nicer when they realised there were multiple things wrong. That's really interesting about the connective tissue in the brain, I had never thought about it. We don't have a history of Aspergers or Autism in the family, but then we didn't know we had a history of EDS until I was diagnosed and my Grandad said his brother could do all these strange things with his body :P I know it can be common in EDS though and would be very interested to hear what your research uncovers x Spoons & Love, Jenni xxx
Zoe Dyer
Zoe Dyer
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.
Zoe Dyer
Zoe Dyer
Thank you so much for your nice reply Jenni.Spoons and love to you too xxx
Jenni Pettican
Jenni Pettican
Thank you for watching Zoe! Lovely to hear from a fellow Essex girl! Definitely needs to be more awareness out there so I'm glad I'm getting somewhere :) Best of luck in getting the right diagnosis. Spoons & Love xx
jasper brookman
jasper brookman
wait, wait, wait, you need aids to walk? i'm confused
Jenni Pettican
Jenni Pettican
I don't really know all that much about Classical. Would love to learn. Will drop you a message x
jasper brookman
jasper brookman
i am great, classical is easier to deal with i think, no braces whatsoever, cycle to school everyday. if you want to talk with someone with classical, i'm here ;-)
Jenni Pettican
Jenni Pettican
Oh sorry Haha :P Cool, I've never actually spoken to anyone with Classical before. Hope you're as well as possible :D x
jasper brookman
jasper brookman
* coughs * i was making a joke about mishearing it, i know it's painful to walk :D i know people with hypermobility type and i have classical myself
Jenni Pettican
Jenni Pettican
Yes I use a stick as the pain in my legs, hips and back means walking is very painful and I can't do that for very long so for a task that requires a lot of walking, such as shopping, I will use my wheelchair :)