I have a rare disease. It has no cure and I have to take medicine every day so I don’t get sick. If I didn’t take my medication for months I would get weak and it could even be deadly. But I don’t think about that. I just think that if I take my medicine I’ll live until I’m 100. I’m not going to let it stop me.
I was born with a cleft lip, like the children in the commercials on TV. They placed me in an incubator for a week and when they took me out, my doctor discovered that my temperature was below normal. My doctor scanned my brain using an MRI (magnetic resonance imaging). He found out that I don’t have a pituitary gland, which is a part of the brain that produces hormones that regulate growth, temperature and stress. He diagnosed me with hypopituitarism (it’s pronounced high-po-pit-u-it-ir-ism). My doctors don’t know why I have it.
From that day on I’ve had to take medication to give me the hormones I’m missing. The doctors told my parents they had to give me growth hormone shots every day to help me grow. The shot did what my body was supposed to do. (They gave me the shots every night until middle school, when the doctors said my height was normal). Four months later I had surgery to fix my cleft lip. I have other health problems too, like asthma. I use an inhaler when I have trouble breathing.
I’m about 5’1. Without growth hormones, I’d be even shorter. When people ask how old I am and I tell then I’m 16, they say “Are you serious?” They think I’m 10 or 11.
I also get sick a lot. For most people, when they get sick their bodies produce more hormones to help them get better. If I get sick, my body doesn’t produce enough hormones and I get really sick. Like when I get a cold I sometimes have an asthma attack, and that causes me to get pneumonia.
As a kid, I was hospitalized a lot
In elementary school I got sick every year. I ended up in the hospital because of pneumonia, asthma attacks, high fevers and even seizures. I didn’t like the hospital because my parents and brother weren’t there. The only time I had fun was when I was in third or fourth grade and the last day I was there was my birthday. My mom brought a cake and wanted to light the candles, but my brother shouted, “This is a hospital!” He knew that the room could blow up since I was breathing oxygen from a tank. I was stuck in the bed full of tubes and couldn’t leave. I joked, “Are you trying to kill me?”
By middle school I was a bit healthier since I was growing up, so I wasn’t going to the hospital as much. Once a month I’d get a fever, cold or headaches.
I sometimes wanted to pretend like I didn’t have an illness. I got a little rebellious and I’d skip my medications a few times a week. I knew I could get sick but I was tired of taking them. My cousin, who lived in my house at the time, caught me throwing my meds away. He tattled to my mom and my mom was mad. She told me that I had to take my medicine every day. I did but sometimes I forgot to take them when I woke up late for school.
My mom was worried that I wasn’t taking my medicines, so when I was 14 the doctors suggested I see a psychologist. I didn’t like her. All she did was ask stupid questions. “Are you lonely?” “Of course I’m not.” Her other questions were weirder. “Do you ever feel like killing yourself?” She thought I was a loner who wanted to kill myself. I thought, “I want to make it to 100, so I can see all my grandchildren.” I begged my mom, “Can we quit? She’s a crazy lady.” After the second visit she let me stop seeing the psychologist. My mom knew that I would never commit suicide. She said, “If you promise to take your medicines you don’t have to go.”
My friends make me happy
I don’t feel lonely because I have friends who care about me. My friends like me as me, not as a sick pitiable person. It’s important to me that they don’t see me as someone sick, because I’m still strong. I don’t want them to worry about me or treat me differently.
I met Salma through my mom when I was in elementary school. She’s younger than me but we still have fun. I play with her and her younger sisters. We talk and play board games or go to the park.
My friendship with Sarah is very special. She’s my age. We met in the bathroom of our mosque in Hawthorne when I was 8. She’s outgoing and likes to ask lots of questions. I talk to her on Facebook because we now live far away from each other. Most of our conversations are silly. She asks me if I like anyone. “Hush up will you? I like no boy. BLEH.”
Sometimes it’s hard having a disease. I wish I didn’t have to take my medications. But I know I have to because they keep me healthy. I don’t like going to the doctors. So many tests. They overreact to everything! But I’m used to it.
My one and only cure is to be myself and have fun. I like writing stories and having sleepovers with my friends and cousins. We talk and sometimes we tell scary stories. That’s why I don’t care much about having a disease, because I still can have fun.
There are a lot of people who have a disease who do great things and I want to try to achieve the things I want to do. I want to write stories, become an author and an ESL teacher so I can travel the world. I can do anything I want to do.