Wednesday 22 July 2015

What is it like to live with Ehlers Danlos Syndrome

Today I've decided to link my youtube channel instead of writing because my cursor keeps highlighting and deleting what I have written which is driving me mad! Just writing this has taken 4 attempts and I had written 3 paragraphs but lost it all!! To be honest the videos were so spontaneous I think I've said it all. I was surprised by how emotional I became but I have chosen to share them because I want to encourage other sufferers to not feel ashamed or embarrassed by their conditions. Especially the hard times.

It's a frightening thing to be so vulnerable on youtube but if these videos help just one person feel less isolated, alone and misunderstood then making myself vulnerable is worth it.

I dream of creating a youtube community where people can support and understand each other and inspire one another to carry on the fight for a better quality of life despite their illness.


https://youtu.be/S60424Y3NEo

https://youtu.be/gkplmyyy-Y8


https://youtu.be/Zz0bUrA1BoY


https://youtu.be/CUJ86u-UhiM

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