Ehlers Danlos Syndrome

How I've been affected living with Ehlers Danlos Syndrome

Category:

People & Blogs

Tags:

• Ehlers Danlos Syndrome
• braces
• j-tube

[nakkisoddeseigh]

I did the prolotherapy thing, it doesn't work for everyone.

What it does is makes us produce more crappy collagen, and that's why it often fails for EDSers. And no you haven't been lied to, there is reading and conference sessions on prolotherapy, just not enough people know about the potential benefits for some of us.

[gladitsnotme]

You are so strong. God bless you!

[LucaBlightBadass]

@dilateyourmind So glad prolotherapy worked for you, im saving up to have it done for my hypermobility, has your prolo still kept your joints stable is there any side affects i should know about cause i need it done on my ligaments along my spine which kinda scares me a bit!

[isaacHunt2]

@freeliving1 How on Earth does Type 2 progress to Type 4? They are genetic mutations on different genes which cause very differing symptoms and pathologies. You either have one or the other, considering how rare Vascular EDS is, it's unlikely to be Type 4.

[vivisonga1111]

luv u nicoleeeeeeeee!!!

[MissScorpioBabe]

Thanks for the video. I'm 21 and have EDS type 3 too. It's nice to see your still smiling, I find it pretty hard sometimes especially since most people don't understand.Keep being inspiring! It's great to know there are other people out there like me :) xx

[elizabethlea27]

Thank you for making this video. I have hypermobility type as well, though not nearly as severely. HUGS.

[scottssister1]

Im curious what led to your jtube? How were you unable to eat safely? I haven't heard of this. Sometimes I have trouble swallowing a bit, but never correlated the two.

[stewartnokia]

I got told at an early age i have eds but had no idea how bad it can be until reading on the internet today. i just seem to suffer from very easy bruising. stay strong

[3075bridget]

Well done video on your story and the EDS type 3 condition overall. Congratulations.

I have EDS type 3, but am in my late 40s. It isn't fun, but we struggle through. I've tried to explain the syndrome simply as weak skeletal glue. Others don't grasp how that makes movement and non-movement hard work. So, I now ask do you know that uneasy feeling you get when you sit on a bar stool that's wobbly? Imagine your whole body feeling like that. It seems to help some people get it.

[77095066]

@nakkisoddeseigh Darn, I hate to hear that it did not work, but this is the very type of information I have been looking for and there is none to be found.

Since replies are so limited could we please discussthis in detail? I would love to hear ALL feedback positive or negative you can give me because there is no sense me continuing to spend big bucks if it may dis-appoint me in the end.

Can we continue this discussion without the 500 character limit on my page please?