What is it like to live with Cystic Fibrosis?

By: Anni Mumford

Most people, when they first meet me, have no idea I have cystic fibrosis. They may see a girl of twelve or thirteen, who loves to write, draw, and paint. A girl who lives at home in W. Barnstable with her mother and father, eleven year-old sister and pets. They may not know that when I was only 6 months old, I was diagnosed with a fatal genetic disease called Cystic Fibrosis. There is no cure.

My grandmother noticed first. She remarked to a friend of hers that my skin was unusually salty and her friend, who coincidentally had several grand-children with Cystic Fibrosis, and suggested I be taken in for a sweat test, the only test available in 1988, in which a sweat sample was taken and tested for abnormally high salt levels. I tested positive, and my pediatrician put me on enzyme capsules to help with my digestion, and if I don't take them, I have diarrhea and a stomach ache for several days. I have to take them every time I eat, and, since CF patients have problems with digestion, I am small and thin and I have to maintain a high calorie diet. I have physical therapy, PT, to help cough up the mucus in my lungs.

Growing up, I didn't really grasp the concept that I was different from other children. Didn't all children take enzyme capsules when they ate? No. Didn't they all have periodic blood tests and get to miss school to drive up to Children's Hospital every three months for a check-up? No. Didn't they all have surgeries? No. Didn't they all take over 50 assorted pills daily? No.

I don't remember exactly when I began to understand, but, like all small children, my first reaction was, "It's not fair!" As I began to grow older, however, that reaction changed somewhat, to "Why me?" I don't know. I didn't do anything wrong to deserve this, and neither did my parents. I could have tested negative, like my sister. But I didn't. I learned to accept it. I learned to deal with the questions. It's strange, how we have been raised to be wary of anything or anyone different or unusual. Possibly a survival instinct, left over from several million years of evolution. Or perhaps something learned.

When I was eight, it was decided that I would go into the hospital for a clean out, since the results of my breathing tests were worsening and I had a bad cough. I was put on IV medications for two weeks and recovered. During that time I developed a phobia of needles, because we had several in-home nurses who were not very good at drawing blood or putting IV's in my small veins and I had several painful experiences because of it.

Since then I have had many surgeries for my nasal polyps and one other clean out. This July, I will go to Children's Hospital for my ninth surgery. Many people assume I am nervous, but I'm not. Only sad. For myself, and for the 30,000 other children who have CF as well. Many
children are much worse off that I am. Some children will not survive through adolescence. I may not live past 30.

Sometimes, looking ahead, it is discouraging to see a life dominated by something I have no control over. But then I have to remember the hope. In 1989 the CF gene was found. Many new medications have been created, new discoveries made. But that is only possible through a group of people like you. Without the money raised by charity events like this one, I may not be alive today. For every baby born with CF, another child will die, but together, perhaps we can change that.