First, you notice your child has abnormal eating or sleeping habits. Then, an irregular sleeping pattern alerts you even more. You contact your child’s pediatrician, thinking this is somewhat of a natural occurrence for babies and can be easily resolved. Your child’s pediatrician does a whole host of tests and asks you a bunch of questions, weeding out what doesn’t fit. Then, you hear words you never thought of hearing: “Your child has cystic fibrosis, or CF.” Learning that your child is ill can be tough, but with resources and support, life with CF can be a little easier to manage. Here are some great CF resources for parents and kids dealing with CF.
Starlight Children’s Foundation
The StarlightChildren’sFoundation provides a variety of resources to parents of children with cystic fibrosis. Some resources are online and some are not. What is provided depends on the family and child and their individual needs. Through various Starlight Starbright programs, families can receive a greater knowledge of CF, find friends and more. There is a fun interactive program online that teaches kids about their CF. To use this free program with your child, click here.
Cystic Fibrosis Educational Materials
Cystic-L has a great list of books, videos, and other materials that patients and parents affected by CF would find useful. Many can be obtained from your CF care provider upon request. Cystic-L also loans out copies of some of them for those who cannot get them from their physician, pediatrician or other medical care providers. With the use of these materials, parents can learn more about CF, how to cope, and what it is like to live with cystic fibrosis. Cystic-L also has other resources and links useful to parents of children with CF.
Cystic Fibrosis Foundation
The Cystic Fibrosis Foundation, at cff.org, funds hundreds of care centers and provides CF news, research, treatment information, and other resources to parents, caregivers and CF patients. This is a good way to find out where the nearest CF care center, supported by the CFF is located in relation to your place of residence.
Cystic Fibrosis Forums
CysticFibrosis.com offers forums to those dealing with cystic fibrosis. This a place to connect with others going through a similar experience. Communicating with other parents in a situation similar to the one you are in could help relieve stress and could also benefit you, as well as the other person with the exchange of personal knowledge surrounding CF.
Cystic Fibrosis Info & Personal Diary
At MyCysticFibrosis.com, parents and caregivers can access learning materials as well as create their own personal diary on their CF experiences. Writing is considered a form of stress relief. The diary section could be beneficial in that regard. It also could serve as a great way for parents to keep track of symptoms for the doctor. The articles and other helpful resources could be a great way to learn more about CF, as well as ease some concerns you may be having about your child.
Cystic Fibrosis Research
For the latest in Cystic Fibrosis Research, parents and caregivers can visit CFRI.org. Medical teams are constantly making new discoveries about CF and other diseases. Keeping up to date may even prove to be a life-saving decision for your child.
At KidsHealth.org, parents, kids and teens each have their own special section. There is a great deal of information on CF and children’s health in general at KidsHealth.org. Part of managing CF is keeping the total body healthy and this is a helpful resource for that.
