Drug Study In High School

Imagine having a medical problem since birth and one morning you wake up to find your hand swollen to the point where you are unable to move your fingers. Alright, no big deal. Until you get to school and everyone you see asks you constantly "What is wrong? Are you ok?" After you explain what happened and that you are okay is when you start getting the annoying questions: "So what would happen if I poked it with a needle, would blood start pouring out of the hole? " So, it is like a giant blood blister?" Or better yet, "What if your hand never stops swelling one day and it swells so big that it just explodes?" This was what it was like most of my life going to school with my condition. Until one day mom got a call from our specialist that

The first-time meeting with Terri I was pretty nervous because I was not sure what to expect. We went through a long consent form which had all of the do 's and do not 's in it. Such as, do not do the study if you are pregnant or trying to get pregnant. If you were not abstinent there was special brands of protection you could use and specific brands of birth control. If a person gets pregnant during the study that person can no longer continue with the study because they do not know what the drug would do to the fetus. After signing lots of papers and taking a pregnancy test as well as getting blood work done, I was officially taking part in the study. I had the option to have Terri give me the drug, which meant I would have to come in every two weeks to the Hershey Medical Center. Or I could give myself the drug and only have to come in once a month or less. I opted to give it to myself because it would be easier to not have to go to Hershey twice a month. I had the option to have the injection in either my stomach, arm, or thigh. I chose my stomach, even though I was super scared to have a needle in my stomach, because Terri told me that patients who get it through their stomach experience less burning since there is more fat in the stomach area. I decided to do it in my stomach. And I have been doing to myself since

When the end of the study drew nearer, Mom and I started to think about what my body would do once I was off the drug and began to worry about it. We were not sure if my body would have a spaz attack and be swollen in several places at once for weeks or if it would not do anything and just swell 2 or 3 times a month like normal. The next visit I had in Hershey, I asked Terri what she thought would happen. Instead of answering me she asked me a question. She said, " Caddie, what if I told you the study was extended for another year?" I told her it would be amazing, and mom just started crying because she was so happy. So here I am a year and 3 months later still taking the drug with no adverse effects from the drug and forgetting what it is like to have H.A.E. Almost like how Olaudah Equiano had forgotten that he was a slave for a period of time because he was being treated so