Medical Mysteries - Ehlers Danlos Syndrome Video

[cara09]

Hi,

I found a recently added video on Youtube on Ehlers Danlos Syndrome that was on Discovery Health. I hope that you all find it interesting.

http://uk.youtube.com/watch?v=m9rx2n9zw2c

Cara

[Fiona-Jane]

hiya,

thats one of the best videos i've seen on youtube, it explains eds quite well and the website that is mentioned near the end is quite good too, i've just had a peek at it and was pleasantly surprised although some of it is still under construction.

thanks for posting it!



fi xx

[aheaps]

Very interesting. Thanks for posting the link.

Claire

[Kayzee]

That was really well explained. Thanks Cara

Kay x

[gila]

cheers cara!
had been hearing about this- glad someone put it up on youtube!
good one!!!
the only thing that surprised me was the "will have many more surgeries to tighten things to look forward to"...
??????????????????
have the americans developed a different kind of surgery that works?
guess I should ask the woman via her website...
xxg

[Kayzee]

I thought that too Gila I was told, only 2 months ago, when they discovered my ligaments at the top of both legs, have hyperextended so much, its caused both femurs to drop onto my knees, balancing there They told me there was nothing they could do. I asked couldn't they tighten them, and was told they couldn't.

Maybe I'm wrong

Kay x

[Finarda]

Lynn (the person on the video) is part of the CEDA mailing list on yahoo groups. CEDA is the Canadian EDS - don't be misled by it being Canadian though - most are from other countries, mainly the US. You could join the group and ask her? Or if you decide not to let me know and I can ask her.

fiona

[Sue New]

Hi Guys,

I remember when I was first diagnosed with HMS back in the 80's that one medic made a through away comment of "short of operating on every joint in your body to tighten them up, there is nothing we can do for you". Perhaps the comment made in the video was meant in a similar generic manner?

Sue.

[gila]

finarda- if you already are a member of CEDA and it'd be easy for you to ask... yes please do!!
cheers!
xxg

[Finarda]

OK, I asked! Will let you know what she or anyone else says. Here's the link to the main CEDA site in case anyone was wondering. The yahoo group can get a bit nasty on occasion, it's rare but irritating when it does.

http://www.ehlersdanlos.ca

Fiona

[Joski]

Just a slight word of warning regarding the CEDA yahoo list, as I used to be a member but ended up being treated very badly, including a case of cyberstalking which was not handled or dealt with properly. I don't wish to put people off, but I just want to warn people to be careful if they do decide to join or get involved, as the group is not properly moderated or monitored so bullying, nastiness and flaming often go overlooked and unchecked.

If you want to contact Lynn from the video directly, I would suggest doing so via the EDS Network which you can reach by clicking HERE

[Daeinera]

i can't watch it the vid is private

[rubygloom]

same here the vid has since been marked as private maybe she diddnt like being asked questions?

[cara09]

Hi,

You can also view this video at the link below taken for the EDNF website:

Medical Incredible Video

Cara

[paw]

Cara there are two different programmes on Discovery Health. I have that channel at my house. The one with Lynn starts with another story about a baby then they talk about Lynn when she is a teen having pain from swimming.

The one in your link (post above mine) is about a family where the stepfather has EDS and then they realize that the wife and her two children have VEDS which they got from her.

The Discovery Health programmes are usually well done and informative about different medical problems. I think the attitude in the States is more willing to do surgery and fix a joint even if they know it might not last as long. They just want to give as much function as possible to the patients. Of course, the surgery can have a high failure rate. Hopefully each doctor will inform the patient before they make their decisions!