411 on Ehlers Danlos Syndrome

You can't tell I'm reading my notes from a word document on my laptop behind the camera at all! Just a quick rundown of ehlers danlos and some information below:

http://en.wikipedia.org/wiki/Ehlers%E2%80%93Danlos_syndrome

http://www.ednf.org/index.php?option=com_content&task=view&id=1347&am...

http://www.ehlers-danlos.org/index.php?option=com_content&task=view&i... (UK site, this is my mom's favorite)

http://www.chronicbabe.com/ (Support for women and girls with chronic illness)

http://edsaus.ning.com/ (support in Australia)

http://www.dailystrength.org/c/Ehlers-Danlos-Syndrome/support-group (support group forums)

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[LucaBlightBadass]

Can tell you have eds straight away cause you have beautiful velvety skin im 28 now and my skin still makes me look young.

[owlsdragonsstuff]

@LucaBlightBadass Thanks. It's a pain sometimes though, I can never write myself reminders on my hand or arm unless I have a felt tip pen, sharpie or maker.

[neartpuppy]

Great video! I have EDS type 3 too. Hi :)

[owlsdragonsstuff]

@neartpuppy Thanks :). If you don't mind my asking how long did it take you to get diagnosed and how badly affected are you?

[owlsdragonsstuff]

@owlsdragonsstuff I don't mind at all. I've had minor symptoms all my life, but didn't reach an official diagnosis til November 2011. It's been very bad in the last year and a half. I've had to drop out of high school because of it. The biggest problem for me is the pain. I'm not the worst affected person around, but I'm still pretty bad. I have a good 2 hours rather than a good day.

[owlsdragonsstuff]

@neartpuppy Hi! How are you finding life with EDS type 3?

[neartpuppy]

@owlsdragonsstuff Hey! Sorry for the delay. I started seeking a diagnosis just over 2 years ago, and I was diagnosed last february, so it took about 13 months of actively seeking one. I'm 30 now, and my EDS didn't affect me much until I was 27. I'm on disability now, but I can handle volunteering a couple times a week for 2 or 3 hours. Walking has gotten a lot harder but I still enjoy it. I get a lot of headaches. I have a Chiari 1 malformation also.

[Missdanica123]

Thanks that helped a lot! I get the same comments when I have to sit out of gym and no one understands why they think I'm faking or something. Always thanks for the advice it was good to hear that someone knows what I'm going through :)

[owlsdragonsstuff]

@Missdanica123 Working out is a very tricky area with EDS. I'm starting a new workout program to strengthen my core muscles so that it will be harder for me to hyper extend. You need to find a physio therapist who specialises in or understands EDS to guide you through specific and safe excersizes. If your mom won't listen to you maybe your doctor could help explain it, otherwise just keep trying and don't give up. She probably just feels guilty that you're sick

[owlsdragonsstuff]

@Missdanica123 Well you're certainly not alone and I completely understand feeling like a freak. I I'd always have to go and sit out of PE and because I never looked sick I got a lot of bad comments to, even from teachers. People don't get pain because they can't see it and they don't get EDS because they've never heard of it. It does get better as you get older and people start seeing it more. I'm here to talk whenever you want to. :)