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ASK   I like The Beatles.

I like poetry.

I like my pacemaker.

And sometimes I like to fight fire.

heartfilledminds:

International rare disease day!

Today is international rare disease day: a day to raise awareness about rare diseases. 

I have a rare disease: Ehlers Danlos Syndrome. Ehlers-Danlos syndrome is a inherited connective tissue disorder. This means that my connective tissue is not strong enough to hold everything in place. My skin is very elastic and tears and bruises easily. My muscles and ligaments tear very easily and my joints dislocate without reason. Everything in my body is too loose and this gives rise to a lot of different medical issues. 

I’ve dislocated my feet, ankles, knees, vertebrae, hips, ribs, collar bones, shoulders, wrists and fingers numerous times. Due to this I am always in pain. The pain never goes away and becomes worse after a new dislocation or subluxation. 

I am always tired and sore, because my muscles have to do a lot of work keeping everything in place. Even by doing something as simple as typing, opening a door, or walking, I can dislocate something.

There is no cure and the only treatment is supportive. Due to Ehlers-Danlos syndrome being so rare, it took me ten years to get diagnosed. Ten years of going from doctor to doctor, from hospital to hospital, from test to test, without anyone knowing what was wrong. Doctors told me I was making it all up, that it was all in my head, that it was psychosomatic. 

It is important to raise awareness so that it doesn’t take other people over ten years to get diagnosed.

What can you do?

Reblog this. It helps. Even if people just hear the name, it helps. I found out I have Ehlers-Danlos by this and it might help other people find out what’s wrong with them.

- If you think you have Ehlers-Danlos, you might want to look up the Beighton score. The most common symptoms of Ehlers-Danlos are:

  • Hyper-flexible joints
  • Joint pain
  • Fatigue
  • Sprains, subluxations and dislocations of joints
  • Muscle pain
  • Soft/elastic skin (not everyone has this though

If you think you have it, here is the Beighton scale, you get one point for every thing you can do. If you score 5/9 or higher you might have Ehlers-Danlos syndrome:

  • Placing flat hands on the floor with straight legs
  • Left knee bending backward
  • Right knee bending backward
  • Left elbow bending backward
  • Right elbow bending backward
  • Left thumb touching the forearm
  • Right thumb touching the forearm
  • Left little finger bending backward past 90 degrees
  • Right little finger bending backward past 90 degrees

IF YOU HAVE QUESTIONS, DONT HESITATE TO ASK ME ANYTHING. I’M HERE FOR YOU.

This is the simplistic, most descriptive explanation of EDS I have ever read!

Now back to my dislocated shoulder…

— 15 hours ago with 208 notes
#eds  #jhs  #subluxation  #dislocation 

So I dislocated my shoulder and tore my rotator cuff. Good job self. Way to have joints that can withstand impact.

Guess I’ll be focusing more on abs & legs. Motherfucker.

— 15 hours ago with 1 note
#joint hypermobility syndrome  #fitspo 
theantiherooftime:

A number one dad, ten out of ten, Dad of the year, gettin laid all year this year, best dad ever, you did it.

theantiherooftime:

A number one dad, ten out of ten, Dad of the year, gettin laid all year this year, best dad ever, you did it.

(Source: 4GIFs.com, via crazynorwegian62)

— 17 hours ago with 192487 notes
akkunks:

Makin progress!

Haaaaave you met Andrew?

akkunks:

Makin progress!

Haaaaave you met Andrew?

— 17 hours ago with 2 notes
"It never gets easier, you just get stronger."
Kai Greene (via akkunks)
— 17 hours ago with 2 notes

The gym is all I ever think about anymore.

— 17 hours ago with 2 notes
#priorities 

Romanticisation of Mental Illness, Kelsey Weaver

(Source: Flickr / kelseyweaverphotography, via bookiesbooty)

— 1 day ago with 156980 notes

takeoffyourpantsandjagket:

sitting in silence with your best friend is actually really nice because youre together and youre just happy to be together even if the both of you are just scrolling through tumblr and twitter because you occasionally point something else to the other person and laugh and maybe talk but youre just comfortable and together and thats enough

T

(via bookiesbooty)

— 1 day ago with 127406 notes
"We travel not to escape life, but for life not to escape us"
— 1 day ago with 3 notes