Cystic Fibrosis Community — Parents and Caregivers
External Links for Parents and Caregivers of Patients with Cystic Fibrosis
There is so much information on the internet about cystic fibrosis, it can be overwhelming sometimes. You can start your search using these external websites. Many of these sites are great resources, but remember that Genentech cannot endorse anything you might find.
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CysticFibrosis.com
A community for people concerned with cystic fibrosis. Contains interactive forums and blogs to find support and share information; celebrate and remember with the community.
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Yahoo Groups — Cystic Fibrosis Parents
This is a place to discuss issues specific to raising children who have been diagnosed with cystic fibrosis... a place for parents of children with CF to come to for support and information.
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BabyZone.com
BabyZone.com answers all your baby care and pregnancy questions; the only all-in-one pregnancy calendar that walks you from 'getting pregnant' through baby development stages.
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Cystic Fibrosis Foundation
A wealth of information about cystic fibrosis, with most of the content geared for teachers.
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Cystic fibrosis — Wikipedia
Just the facts at the web's most famous online encyclopedia.
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Kids Health — Parents — Cystic Fibrosis
The Kids Health resource on cystic fibrosis, a genetic disorder that particularly affects the lungs and digestive system and makes kids who have it more vulnerable to repeated lung infections, affects more than 30,000 American children and young adults.
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News For Parents.org - Cystic Fibrosis Advanced in Treatment
An extensive cystic fibrosis resource for parents. A collection of basic information, expert advice, and top news stories.
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Cystic Fibrosis — Signs, Symptoms, and help information
A simple resource of cystic fibrosis information.
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Showing Support: Create a Parent-to-Parent Network
Studies show that support groups can help most parents of children with cystic fibrosis to better cope with their situations. Gathering with others who share their experiences also helps define their roles in the healthcare process, improve their self-management skills and feel better about caring for their children.
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Parenting a Child with Cystic Fibrosis
Start with these recommended resources for finding facts, strategies, and advice on parenting children with cystic fibrosis.
Indication and Usage
Daily administration of Pulmozyme in conjunction with standard therapies is indicated in the management of cystic fibrosis (CF) patients to improve pulmonary function. In patients with an FVC ≥40% of predicted, daily administration of Pulmozyme has also been shown to reduce the risk of respiratory tract infections requiring parenteral antibiotics.
Safety and efficacy of daily administration have not been demonstrated in patients for longer than 12 months.
Important Safety Information
Pulmozyme should not be used in patients who are allergic to any of its ingredients. Pulmozyme should be used in conjunction with standard therapies for CF. When starting Pulmozyme therapy, patients may experience change in or loss of voice, discomfort in the throat, chest pain, red watery eyes, rash, dizziness, fever, or runny nose. These side effects are usually mild and short-lived.
Pediatric Use
There is a limited amount of information available concerning the usage of Pulmozyme in patients who are younger than 5 years. The decision to use Pulmozyme in these patients is made after considering the potential for a benefit in lung function or in decreasing the risk of RTEs.
Important Safety Considerations
The safety of Pulmozyme given by daily inhalation for 2 weeks has been studied using 98 CF patients with 65 of them aged 3 months to <5 years (younger group) and 33 aged 5 years to ≤10 years (older group). The PARI BABY™ reusable nebulizer (which uses a face mask instead of a mouthpiece) was used in patients who were unable to show that they could breathe in or out using their mouth throughout the entire treatment period. There were more reports of cough, moderate to severe cough, runny nose, and rash in the younger group of patients. Other reported events tended to be of mild to moderate severity. The kind of side effects reported was similar to that of Pulmozyme when used in the larger trials that studied older patients.
For further information, please see the Pulmozyme full prescribing information. If you have questions, please discuss them with your CF healthcare team.
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