Cystinosis Parent Handbook Final - Cystinosis Research Network

Living with Cystinosis: Garrett’s StoryHi, I’m Garrett,16 and am here to talk about life as a teenager with cystinosis.Right now I take 85 pills every day because I’m participating in a drug trial for thenew extended release Cysteamine Bitartrate. I no longer have to get up in themiddle of the night. Boy did that make my life better. To be 14 and finally get anight’s sleep without interruption helped me in so many ways. Seems like a largenumber of pills, but I’m a big person so my dosages may be higher than manyof yours. I work out and have a lot of muscles. My parents worked very hard toconvince the doctors that growth hormone was appropriate for me, and I tooka shot every day for 7+ years. It was something that I wanted, and participatedin. Can’t say that was my favorite part of the day, but it just became normal forme. Near the end when it was obvious I was in the growth curve and around thenormal ranges, the doctors and my parents gave me the option to quit the shots,but I wanted to keep them up for as long as they worked, and they left the decisionup to me. I continued with them till my growth plates were closed, and there wasno more growth to be had. My Mom says I’ve always been very compliant withtaking my medication. When I was a baby, she would talk to me and say things like, “it is the rules”, or, “you have to takeyour meds.” My Mom and Dad always had a set or two of pill cases with them so we could always go out to eat or makeplans on the go. My kidney function is still really good.I’m a freshman in high school. I just lettered in a sport. I was on the rifle team and as a freshman earned a letter. My parentskeep telling me this is a big deal. I haven’t been active in a lot of sports because I don’t sweat adequately. This sporthowever isn’t outside and doesn’t require running (which I love to do). I tend to overheat when I run or do other real physicalactivities. I have taken Tae Kwon Do, won awards in Go Kart racing, and love to swim. My favorite things to do are read,watch TV, play Xbox – just normal kid stuff.My perspective on cystinosis is that I have gotten to go places because of Family Conferences (Detroit, Waterville, Orlando,Salt Lake City, San Antonio, San Francisco) that otherwise I probably would not get to visit. I know other people all overthe world that I to see every two years, or sometimes more often. I’ve been involved in research studies in San Diego, SanAntonio, and Atlanta. That means I’m involved in improving my own health, but also that of others. I get my own meds readyand most of the time I remember to take them on time. I know what my last cystine, creatinine and BUN levels are.I think this disease is harder on my parents than me. For me everything is “normal”. I’ve never known any different. I’m apretty normal kid in my mind. Yeah, I take meds, have doctor visits and blood draws, but I’ve been doing it all my life. Mytwo best life friends have been diagnosed within the last two years with life threatening diseases. One Lymphoma, the otherCrohn’s. Interesting that these two people who have accepted me for who I am all my life, now are dealing with their ownissues. It’s nice that I can be there for them and listen, and accept them as they have me.47Cystinosis Parent Handbook