Don't Presume

[louise123456ist]

Oh my goodness

this has broken my heart God bless

I cant tell you how much this is me inside how i feel and how I suffer too.

But most of all she is so lucky for someone to care for her and shout it out for her

wow this is an unbelievable example of how people suffer with this condition and pain

it says it all

[Marikay4]

omg this made me cry.... thank you very much for sharing!

[sherry5997]

heartbreaking and beautiful - now if we could only get the doctors to watch - and truly understand - keep up the good fight....

[jkweirich]

I have chills... And I just started crying... Thank you for this video. Thank you so much. And likewise, I'm so sorry that you had to make it.. I got the link out of The Hinge. Have a blessed day.

[drooooopy]

Thank you

[cingle2004jp]

I don't presume to tell you any, rest her soul

[beatamyhill]

My daughter suffers from EDS. My heart is so full after listening to your poem and watching the pictures that the tears flow and I cannot speak.

Thank you for giving all EDS sufferers your words, for saying what they often have no energy to say.

[angelsolace]

That is one of the most powerful and emotional vids I have ever seen on her. From someone who suffers myself so much, I can relate so well. Your daughter is so lucky to have you to care for her.

Amazing poetry.

Amy x

[bugsinrug]

Wonderfully insightful ! Thankyou for this. hugs, Chris

[Elfins]

Thank you Chris x

[EDSGIRL021]

What a great video .. it speaks for its self

[Elfins]

Sorry for the delay Edsgirl I am mourning the loss of my sister.... this does speal for itself and I thank you for your comment

[Minniver]

This was sobering. Wonderful video.

[Elfins]

Thank you Minniver. Its been a long long haul but at least we know what we are dealing with now.

[fogggygyrl]

That was powerful Elfins! Way to make good use of your insomnia. ;)

[Elfins]

Thank you Fogggygyrl :)

[wishgranted]

This was haunting...i literally got shivers at the thought of what that poor girl has to go through. Your words are true - so often younger ones are dismissed too easily when theyre suffering things worse than adults can imagine.

My thoughts and prayers are with the whole family...perfect video to raise awareness.

xx

[Elfins]

Thank you Grant. I do have more powerful material but my daughter is unsure of putting it on youtube so I respect her wishes. I know there are worse things in the world to suffer from but my heart goes out to any child who has to suffer that ammount of pain for the rest of their lives.

[pierz1981]

Hi Linda,

I'm so sorry that your daughter has to suffer each and every day with such pain and discomfort. I have to say, you made a great video in this one... it really brings the point home, about how doctors seem incapable to actually LISTEN to someone who is obviously in serious pain.

All the best xx

[Elfins]

Thanks Pierz, Its better now as we have changed hospitals and these do actually listen to her. But before, it was such a nightmare, despite all the dislocations, massive muscle spasms etc, they wouldnt give her anything stronger than paracetamol and sent her for mental health interventions for almost 2 years when she was told to look out the window and think happy thoughts and if she only changed the way she thought,it wouldnt hurt so much..... GRRRRRRRR.

[ladybard1968]

Listening to people is the only way to learn. I was in tears watching this. Yes listen to people.

[Elfins]

Thanks Amanda, although I didnt mean it to be so sad. I think listening is the best thing, shame more dont practice this.

[BertnHarry01]

What a shame, I have never heard of this condition before.

[Elfins]

It is quite rare BertnHarry.