MbShea@PWP@English@UMCP

ABSTRACT:
Cystic Fibrosis is a genetic disease that causes thick, sticky mucus to buildup in the lungs and digestive system. The disease affects the cells that produce mucus, sweat, and digestive juices that are normally thin and slippery. In Cystic Fibrosis, a defective gene causes these secretions to become thick and sticky instead. In the lungs, the thick and sticky mucus blocks the airways and passageways, making it hard to breathe, and eventually causes lung damage. In the pancreas, the mucus interferes with digestion by clogging the ducts leading to the digestive tract. An estimated 30,000 children and adults in the United States and 70,000 worldwide have Cystic Fibrosis. Nearly half of the Cystic Fibrosis population is 18 years or older and about 1,000 new cases of Cystic Fibrosis are diagnosed each year. Although a lot of information about the disorder can be found online, a lack of information exists for the young adult population (between the ages of 18 and 24) that suffers from Cystic Fibrosis. This guide will describe background information on Cystic Fibrosis including the genetic basis of the disease, diagnosis, symptoms, risks for infection, and treatments available for young adults. In addition, this guide will include information on managing the disease as a young adult including living with the disorder (check-ups and tests) and experiencing the teen years (college, transitioning to adult care, and relationships). The guide will end by providing resources on coping, support groups, and mindfulness and anti-anxiety about survival.

READER'S PROFILE:
I imagine a young adult reader with Cystic Fibrosis being distressed and anxious about transitioning to adult care and surviving with Cystic Fibrosis because of the disorder's life threatening nature.

READER'S RESPONSE:
I am glad to see that this guide includes resources that help me find support groups and coping strategies for living with Cystic Fibrosis but death is a scary thing. Cystic Fibrosis survival rates, although increasing, are not as high as I would like them to be. I will definitely check out these resources on mindfulness and anti-anxiety but will these resources actually make me feel less anxious about death and surviving....? I doubt it.

N -- would your anxious reader be helped by including a FAQ section that can be browsed? Would this reader -- and family -- be helped by social connections with others?

Can you also check the literature about planned or anticipated new therapies? Anything helpful on the horizon? Gene therapy?