How can I learn more about Cystic Fibrosis?

If you or someone you know has cystic fibrosis, the best source of information is your cystic fibrosis medical clinic team. Cystic Fibrosis clinics offer support in every aspect of CF care. From the pulmonologists to the nurses to the nutritionists and social workers, these professionals are trained to cover every issue that is raised in cystic fibrosis care. They offer many sources of information, from direct counsel to videos and books that can inform you of commonly used methods of treatment and what to expect as the disease progresses.

Another source of information is the Internet. There are countless web pages with information about cystic fibrosis. Some of these are listed in the links section of this web site. There are also internet based support groups available. One of these is the CF Parents list at yahoogroups.com. CF Parents is an inclusive email list for parents of children who have cystic fibrosis. We share our experiences and thoughts, and lend support to one another when needed. We try to keep our sense of humor about us, and learn to live one day at a time with our children. We do not post religious emails to the list... we want to focus on all that we have in common, not in our differences. Messages are not limited to those concerning CF. If you are interested, you may go to http://groups.yahoo.com/group/cfparents to read more about the list and to subscribe. You may want to set your subscription to "digest" at first, so that your mailbox doesn't become overfull.

One very good source of information is the book "Cystic Fibrosis A Guide for Patient and Family" written by Dr. David M. Orenstein. Dr. Orenstein is the director of the cystic fibrosis center at Children's Hospital of Pittsburgh. The book is available at Barnes & Noble and Amazon, and is often given by CF clinics to the parents at no charge when a child is diagnosed with cystic fibrosis.

Ignore any information that you find about cystic fibrosis that is more than five years old. In the field of cystic fibrosis treatment and research, statistics as well at therapies become outdated quickly. This is encouraging, progress is being made!

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