Ehler Danlos Syndrome

At the end of my freshman year I fell very ill and could not walk. I was confined to a hospital bed and could not move around on my own. As this was all occurring we had no idea what was happening. The summer was exhausting learning to walk again beginning with a walker, then crutches, and finally on my own again. No one will know how much we depend on our body until you lose something we need every day to function. The journey was painful but I am happy to say that I can now walk on my own again.

Along with the issues of learning to walk again came the new tests and treatment solutions while we wait to figure out what my ailments were. I started taking medicines to block the pain messengers sent to my brain so that I could not feel the pain I had anymore. That led me to some personality changes that we all did not agree with so I stopped taking it. Since then I have continued to experience pain so we have tried new combinations. I currently take nine medications daily to protect me and make me feel better enough to function in daily life. They consist of stomach medicines, pain blockers, personality medicines, allergy pills, and all different types of vitamins.

We had to wait almost three long years to figure out a diagnosis for my illness. During this timeframe I have been through many tests. I have donated over 5 gallons of blood to be tested, spinal taps, stomach scopes, x-rays, ultrasounds, and many others. I have attended University of Iowa hospitals and MAYO clinics in Minnesota for treatment. At U of I I was diagnosed with chronic pain syndrome but this was not the answer to all of my problems. Once this one piece of the puzzle was figured out I started going to a physical therapist. He evaluated me and diagnosed me on the spot. He said you have Ehler Danlos Syndrome. We were then sent to have tests done and I was confirmed with the disease.

Ehler Danlos Syndrome is a rare genetic disease that gets passed down to offspring. It makes your immune system attack itself and begins to break down the body. I found out I had type 3 which was a blessing for me. If you get type 2 you can have the vascular complications where I don’t. I do not produce enough collagen that is needed for a healthy body. So I am extra flexible and can easily make my joints pop out of place. I am more susceptible to breaks and bruises, scars don’t disappear, and other complications. Along with these issues I get fatigued very easily so I have to manage my amount of activity in which I preform in.

I can continue living for right now but in the end I will need to re evaluate my life because the older you get the more my body will break down and stop working.