Cystic Fibrosis: A Story of Two Families

My cousin has cystic fibrosis and coping with the disease takes up a good part of the lives of two families; ours and my uncle's.

The first thing we did when we found out ET had cystic fibrosis was to learn as much as possible about the disease. Each family had one person assigned to do research and report on what was discovered at least once a week at a family meeting. As time went on, the meetings changed to every two weeks. One researcher was tasked to continually watch the Internet, the other reviews written publications such as newspapers and other sources at our town's large public library.

The fact that ET has CF has even led two of his cousins to go to medical school. They both plan to work in some way on cystic fibrosis. One wants to be in medical research and the other in developing new treatments to help make the lives of CF patients better.

Other members of the family are responsible for watching the nutritional needs of ET They try new recipes suggested by nutritionist advisers at the local hospital. The first thing we do, as families, is to try the new food recipe ourselves. If it is not something we can eat and enjoy, we keep that recipe on hand but avoid using it unless absolutely necessary. This includes most of the pureed food recipes we've come across.

Everyone in the family carries a small notebook. If we hear anything about cystic fibrosis, or if we have any questions that occur to us, we write them down and keep the information for the biweekly family meetings.

Many CF patients attend support groups. We do not ask ET to do that. We have one person from each of our families attend CF support groups every month. ET has to put up with the disease. We want his life to be as long and as normal as possible. Gathering information at support groups is part of the sacrifice every CF family makes. In short, our two families are the support groups for ET, and we are all very proud of that.

Every two weeks we review all information on how ET is doing. Plans are reviewed and approved weekly at the end of the family meetings, at which time ET is present.