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
- 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.