I found out that I had Ehlers-Danlos Syndrome (EDS) after experiencing years of pain in my right knee while doing everyday things which included playing sports. EDS is a condition that causes my joints to be loose and unstable. The doctor said that my knee was just weakened so I wore a knee brace for volleyball and went to physical therapy but my pain continued to increase.
Dr. Colosimo, a well-known orthopedic surgeon who diagnosed me with EDS, said I would need surgery which meant receiving donor tissue followed by several months of physical therapy. They told us that the recovery from this particular surgery is the longest and most difficult. However, after much hard work, I made it through. During this time it was determined that my left knee was much worse than my right which meant going back in for a second surgery.
Prior to my transplant, EDS caused me pain and constantly kept me from doing all of the things that I loved to do. I was energetic – playing sports, roller skating and running around with friends so it was difficult not being able to participate in the activities that I enjoyed.
If I could say anything to my donors’ families, I would like to say thank you. At the age of 14, I would’ve never imagined getting back-to-back surgeries, especially on my legs. By you saying yes to donation, I am no longer in excruciating pain and I thank you for that. Being as young as I am, I don’t know where I’d be in life today if the surgery hadn’t taken place. With the help of your family, I’m able to do things I used to love before I gave up on them. My family and I thank you so much from deep in our hearts. Because of my entire experience, I’ve decided to be a physical therapist, and as a new driver at 16 I have been inspired to be a registered donor because of your help.
Alex
