Ehlers Danlos Support

ive the orthodontist next week right before a 2 hour exam, and since i cant write for that long i have my exams written by another person, i dont know how  im going to talk for 2hours after the orthdontist without my jaw dislocating :/ im still really sore and just not feeling great :( hows everyone else ?

elastic-band:

EDS Awareness – Tumblr, do your bit!

Right guys, I’ve heard Tumblr can do miraculous things. Can we please do one today?

Kitty Richardson, age 12, UK, has written a song called ‘The Cure’ for EDS Awareness Month. Kitty’s got EDS and like so many of us, she has had quite a struggle with it. Her story was recently told in the Daily Mail (http://www.dailymail.co.uk/health/article-2295159/Girl-12-joints-dislocate-TEN-times-day—shes-playing-piano.html). Despite EDS, she has continued in her love of music and, as you can see from this song, she’s really quite a star.

I am calling on you to support her and her song and in doing so supporting EDS Awareness Month. She commented somewhere that she wanted the video views to get to 1000 and comments to get to 25. Can we get it to above and beyond that? I think so. Can we get it beyond? We can try. With enough publicity, Kitty might be able to get this onto iTunes or a CD which would mean a HUGE increase in EDS Awareness.

PLEASE please do your bit today and make her day – if she’s in the UK, she’ll be at school for the next few hours and wouldn’t it be amazing to surprise her by getting her to her target by the time she gets back for the weekend?

Please view, share, comment on her song:

http://www.youtube.com/watch?v=FXLlMtdzKxM&feature=youtube_gdata_player

Reblog anywhere and everywhere - the more countries we can get involved the better.

 

You don’t need to have EDS to help. If you want to support a girl who has persevered through a whole lot of rubbish then please spend a few seconds on her channel. I don’t know this girl but I do know that even at her young age she has inspired me.

Thank you!

xxx :-)

 

The Cure – Kitty Richardson

I struggle every second of every hour

I feel like I have no power

But I have to stay strong

Even though you can’t see anything wrong

Doesn’t mean I made it up all along

Through all the pain

No one knew

I had EDS

 

EDS should be recognised

Even if it’s rare

Somewhere there is a cure

We just need to find it

Then the pain will stop

No more having to hide it

You and I look the same on the outside

But inside I’m falling to pieces

We need more people to be aware of EDS

 

Ehlers-Danlos has six types

One of which will take your life

Unless we find a cure

You can help the smallest bit

Trust me – you won’t regret it

Saving someone’s life is the best deal of all

 

EDS should be recognised

Even if it’s rare

Somewhere there is a cure

We just need to find it

Then the pain will stop

No more having to hide it

You and I look the same on the outside

But inside I’m falling to pieces

We need more people to be aware of EDS

 

You want to help

The only thing stopping you is yourself

Ride a bike, sing a song

With your help, it won’t take a long

You jump – you take it for granted

I wish I could do the same

I would jump with you

But EDS is to blame

 

Somewhere there is a cure (somewhere)

We just need to find it (Help us find it)

Then the pain will stop (oohooh)

No more having to hide it

You and I look the same on the outside

But inside I’m falling to pieces

We need more people to be aware of EDS (of EDS)

 

I struggle every second of every hour

I feel like I have no power

But I will stay strong.

The Cure - Kitty Richardson (EDS Awareness month)

elastic-band:

This girl in the UK wrote and recorded a song about EDS. She’s only 12, I think… but it’s really good. I found it on EDS UK’s Facebook page and thought I’d share. ;Xxx :-)

http://m.youtube.com/#/watch?v=FXLlMtdzKxM&desktop_uri=%2Fwatch%3Fv%3DFXLlMtdzKxM

Nothing like waking up more tired then what you were when you went to bed

This is going to be a long day :/

Not feeling any better at all :(

My shoulder is still subluxing, it’s gone in and out at lest three times today
I seen my physio I have hydro this week so hopefully been in the water can help relief the pain a little

I’m so tired everyone’s telling me how tired I look all I want to do is sleep but I’ve exams next week and being stressed over them Is just making me feel ten times worse

I think ill sleep for a while then attempt to study, but you know that stage when your in pain and you just don’t want to move well that’s me right now :(

How’s everyone else doing ? :)

When I’m in too much pain to do anything

ehlersdanloszebra:

My studying habits…

whatshouldwecallchronicillness:

Normally: 

When I’m feeling extra sick:

(Source: whatshouldwecollegeme, via mylifewitheds)

So much pain.

sickgirldiary:

I don’t know how much more I can take.

ehlersdanloszebra:

Top: My energy ran out a week ago

Bottom So I’m just running on pride and stubborn now

socialjustinope:

You know what is worse than feeling the pain, though? 

It’s when you can’t complain about it anymore. When people feel pain, they complain, get better and that’s it. People get annoyed at you because your problem won’t go away like theirs go. Saying just as much as “I need to sit down for a while” will make people roll their eyes at you.

(via mylifewitheds)