Saturday, October 20, 2012

My Condition

I always knew that there was something a little different about me. I was super flexible and I could move my shoulders so there was a hole in them. (Later I would find out that I was pulling my arm out of its socket!) About a year ago I developed pain in my hips and knees. I just thought it was growing pains. After numerous months with no improvement, I realized that something must not be right. But since the pain was bearable, I didn't pay much attention to it. About two months ago (August 2012), I started having serious pain in all of my joints. I went to a specialist and he even had other doctors come in and evaluate me because they have never seen a case so serious. I scored 9 out of 9 on the Beighton Scale (a scale to determine how flexible a person is). The doctor told me that I have an extreme case of hypermobility. He also told me that I most likely have type III Ehlers-Danlos Syndrome and I will need to get genetic testing done. He said I might also have Marfans since it runs in my family so I will need to get a heart ultrasound. I will need to go to physical therapy to help stabilize my joints. I have to wear a patch on my left knee because I have Patella Tendonitis. I can't participate in gym or sports. I spent 3 hours in that doctors room. This is all a lot but I am trying to keep positive about it :) Below I will explain the medical conditions I mentioned above.

Hypermobility: Also known as being "double jointed". It basically means that your joints can stretch much farther than normal.

Ehlers-Danlos: An inherited group of disorders that disrupts the production of collagen. This causes weak connective tissues. 

Marfan Syndrome: Genetic disorder in the connective tissue.

Patellar Tendonitis: Tendonitis in the Patellar tendon (the tendon that connects your kneecap to your shinbone) 

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