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Living with CF


When you or your child is diagnosed with Cystic Fibrosis, you, like many others, may know very little about this illness. Diagnosis may come as a shock and can be a very difficult thing to face. Diagnosis also leads to many questions and may result in feelings of being overwhelmed, fear, anxiety and sadness. As your CF care team, we are committed to helping you and your family adjust to the diagnosis, develop skills and knowledge to manage the illness, and find a balance between taking care of CF and living a normal life. It is critical for parents to help their children develop normally and have the same expectations of their child as parents do for children who do not have Cystic Fibrosis. This will give your child the best quality of life and help them to prepare for adulthood.

Your CF team will give you books developed by the Family Education program of the Cystic Fibrosis Foundation. These books will help to address most areas of concern and provide a great deal of knowledge about treatments and healthy living with CF. It is also important to note that patients and families become part of the care team. We want you to be a partner in your/your child's care.

In this section, you will hear from other families about their experiences living with CF. You will also be able to get more insight into the various areas that are impacted by Cystic Fibrosis, including education and employment.