Pediatric Pulmonology
Cystic Fibrosis Center
Educational and Support Resources
Cystic Fibrosis Nutrition
- Nutrition for Your Child Birth to One Year
- Nutrition for Your Child One to Three Years
- Nutrition for Your Child Four to Seven Years
- Nutrition for Teens with CF
- Nutrition for the Adult
- Encouraging Healthy Eating
- Bone Health and CF
- Pancreatic Enzyme Replacement
- School, Enzymes, and Sports
- Snack Ideas
- Enzyme Card
- GI and Malabsorption Tracker
Cystic Fibrosis Pulmonary Treatments
- Life with CF, 0-12months
- Life with CF, 1-3 years
- Life with CF, 4-7 years
- Life with CF, 8 and older
- Patient and Family Exercise
- Exercise in CF
- Airway Clearance Techniques
- Common Inhaled Medications
- Nebulizer Treatments
- Cleaning of Nebulizers
Inspire - The URMC CF Center Newsletter
- Spring/Summer 2011
- Coloring page for 5 and under
- Coloring page for 6 to 11
- Coloring page for 12 and over
- Fall/Winter 2010
- Spring/Summer 2010
Cystic Fibrosis Networking Websites
- Cystic-L - Cystic Fibrosis Information & Support
- CFvoice.com
- Starlight Children's Foundation
- Cystic Fibrosis.com
Financial Resources
- Patient Access Network - Provides assistance with out of pocket medical expenses.
Community Resources
- Better Days Ahead - Parenting and coping support
- Kids Adjusting Through Support (KATS) - Provides free, compassionate, support and educational services to children and families coping with loss or serious illness.
- Mental Health Association - Ideal for patients with chronic illness AND a mental health concern; parents can call themselves.
- Crisis Nursery of Greater Rochester - Provides a safe, nurturing environment for children from birth to age 12 whose families are in crisis. For up to 72 hours, children can live at the nursery, cared for by trained staff.
What is Cystic Fibrosis?
Cystic fibrosis (CF) is a chronic condition in children and adults. It most often affects the lungs and digestive system of the body. Children with CF may have chronic lung infections and/or poor digestion of their food. Symptoms which are sometimes seen in CF but are also common in other illnesses may include:
- A chronic cough
- Frequent infections in the lungs
- Wheezing/asthma
- Nasal polyps
- Difficulty gaining weight
- Salty taste of the skin
