Misinformed Doctors and How this Impacts Care | Ehlers-Danlos Syndrome Awareness Month 2021

Hello and welcome back to another video (or a big welcome if you're new here!) Today's video is my second for EDS Awareness Month 2021 and I've managed to get some brilliant people on board to talk about their experiences of Ehlers-Danlos Syndrome. So thank you so much to everyone who has taken part in this video, and also thank you to the people who were interested in taking part but unfortunately weren't well enough this time round. In this video, we are focussing on medical professionals who have shown a lack of understanding and/or compassion, and the impact this can have on diagnosis, treatment and support.
I hope hearing all these different stories of the lack of understanding people have faced will be helpful to those who have been through (or are currently going through) something similar. And I hope it will help people who don't have EDS to understand how difficult it can be when medical professionals don't understand or believe in your condition.
Please do let me know if there are any other videos you would like to see me film - whether they're about EDS, another condition or something completely different. There are more videos coming in my EDS Awareness Month 2021 series, so keep your eyes peeled for those. And there will also be a series of Reels on my Instagram about EDS as well.
In this video:
Navy Rainbow Zebra Sweater - Sugarhill Brighton (No longer available)
Where to find support for EDS:
EDS UK - www.ehlers-dan...
The Ehlers-Danlos Society - www.ehlers-dan...
Hypermobility Syndromes Association - www.hypermobil...
Where you can find the contributors:
Alexis Instagram - www.instagram....
Alexis Blog - therarewandere...
Alyssa - www.instagram....
Andi - / azebrareads
Damita Duplantis - Alaskinsgurl on IG (Couldn't find a link)
Hayley - www.instagram.... and / hayleyk.lowery
Jack - / mr.jackcat1
Julia - www.instagram....
Steph - www.instagram....
Katya - / ekaterinaizlesakoroleva
Maria - / marifermarin20
Marisol - www.instagram....
Nandini - www.instagram....
Nicolle - www.instagram....
Paige - / paigeefithian
Onikage - www.instagram....
Rachael - / therapissedtm
Previous videos about EDS:
EDS Awareness Month - Making the invisible visible - • EDS Awareness Month - ...
Daily Life with EDS - • Daily life with Ehlers...
What is EDS like on MY body - • What is EDS like on MY...
Diagnosis with Ehlers-Danlos Syndrome - • Diagnosis with Ehlers-...
Letters from someone with EDS - • Letters From Someone W...
EDS Myths and Facts - • Ehlers-Danlos Syndrome...
EDS Awareness Month - Diagnosis and Symptoms - • EDS Awareness Month 20...
EDS Awareness Month - Daily Life, Positives and Negatives - • EDS Awareness Month 20...
Where you can find me:
Blog - www.jaffacat.co.uk
Facebook - www.facebook.c...
Twitter - @Jennycole04
Instagram - @Jennycole1988
Pinterest - Jennycole44
Google+ - plus.google.co...
Snapchat - Jennycole44
Anything marked with a * has been sent to me for review purposes, but all opinions are my own and I will only talk about products that I feel fit in with my channel/blog.
Music by Epidemic Sound (www.epidemicsou...)
I'd love to hear your comments and will reply to as many as I can :)

[@omanita7289]

The Ehler Danlos Society, awarnes month and all the people sharing there story is Amazing. Thank you for sharing

[@arielholmes8700]

this makes me feel so extremely lucky that my diagnosis was so easy. i hope in the future everyone can have experiences like mine.

[@damitaduplantis8256]

Great job on putting this video together Jenny!

[@penelopepolinsneemeyer4757]

This is a great video, Jenny. Great job and thank you xxxxxxxx

[@lorahargrove9710]

Jenny thank you for well done video it's wonderful and yes I had many misdiagnosis had to go through many doctors before I found out what condition I have it's so hard thank God for the good doctors that go deep it seems out find out what you have I have new symptoms now so now I'm going through another thing to see if it is connected to what illnesses I already have or if it's something new I'm in a great deal of pain but thank you for letting me see this video have a great rest of the week and a wonderful weekend😇💐

[@NickUncommon]

Thanks for finding all those different voices.

[@FatMatters]

Great video. Thank you. I’m 70 years old and I am just now on a waiting list to be evaluated for EDS.

[@JennyCole1988]

Sorry for the late reply. Thank you - so sorry you’ve had to wait so long to be assessed for a diagnosis. I hope it doesn’t take too much longer and you can be offered some help and management techniques xxx

[@katkaplan3]

Can totally relate to all, but especially was struck by Alexis and the weight issue- I’m severely underweight now due to multiple food allergies and severe gastroparesis, but over the course of my life I was heavier to overweight, abd drs brushed off my symptoms, … as well as the pain.

[@Correctrix]

So out of sync.