My name is Roman and I am twelve years old. I was diagnosed with Ehlers Danlos Syndrome at the age of nine. EDS has affected my life in many ways and causes my joints to dislocate easily. I had to stop Tae Kwon Do when I was almost a black belt, and at the same time, stop participating in contact sports because of the pain and toll on my joints. Sports were my life.
I have constant muscle tension in my shoulders that is very uncomfortable. I have to get yearly echo cardiograms and brain MRIs to keep an eye on things. Doing daily schoolwork causes me to have headaches and neck pain, along with aching hands. Just carrying a backpack to and from school is a burden.
Sometimes it’s really hard to feel like a normal kid. I feel that I am seen as being “different” because I have medical problems. I wish that people understood that my pain is daily and that I push through it and just want to feel “normal.” I have to make smart choices for my body every day.
EDS has made me a stronger person. I have had to be strong while watching my mom and little sister have multiple neurosurgeries because of what EDS is capable of doing. Through these experiences, I have learned what is most important in life, yet EDS has unfortunately made me have to grow up way too fast.
I don’t let Ehlers Danlos stop me though. I have found other things to enjoy in my spare time, like reading, cooking, drawing, playing instruments, and riding my bike. I am very thankful for the doctors who are knowledgeable about what our family has. I hope that someday there will be a cure for Ehlers Danlos Syndrome, so that people don’t have to suffer any more.
Posted on Thu, April 4, 2013
by Tracy Butenhoff