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Cystic Fibrosis Community — 18+ Years Old
Topics for Adults
Congratulations, being an adult allows you to participate in many things that were previously unavailable. You might be thinking about living on your own, starting a career, or going to college. With cystic fibrosis, each path you take has a number of unique challenges to overcome. Explore some the links below to help start your life's journey.
External Links for Adults
If you can't find what you're looking for here, then take a minute to explore these external websites. Many of these sites are great resources, but remember that Genentech cannot endorse anything you might find.
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Facebook.com Group — Cystic Fibrosis
A group page within the Facebook community network designed for people with cystic fibrosis, family members, and doctor's who treat it. A place to share information, personal experiences and stories, and offer support and advice.
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YouTube.com — Cystic Fibrosis Foundation channel — CysticFibrosisUSA
A channel on the popular video-sharing website maintained by the Cystic Fibrosis Foundation. There are several short videos on the topic of cystic fibrosis and a comments section where subscribers — mostly patients or their family members — share stories, links, advice, useful information and support.
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MySpace.com — ROCK CF Foundation
A page on the popular social networking site dedicated to the ROCK CF Foundation, maintained by its founder Emily Schaller. “With the help of a core group of volunteers, the Foundation utilizes the arts, entertainment, fashion and fitness to support research initiatives and heighten public awareness in the fight against cystic fibrosis.”
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Boomer Esiason Foundation — CF University in Second Life
CF University is an area of the popular 3-D virtual community called Second Life, located in the adult grid on Linden Labs Second Life. It is designed as a virtual meeting place for adults with cystic fibrosis and family members of patients. CF University is open only to those over the age of 18.
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CysticFibrosis.com — Forums
The heavily trafficked forums section of CysticFibrosis.com which also includes user blogs. It boasts over 7,500 members and a searchable database of over 20,000 topics.
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Jerry Cahill's Cystic Fibrosis Podcast
A number of useful podcasts from cystic fibrosis patients, doctors, and family members. Addresses a variety of topics ranging from relationships, exercise, transitioning, and more.
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Facebook.com Group — Adults with Cystic Fibrosis — A living legacy!
“A place where adults living with cystic fibrosis can share their life stories, adventures and goals. Coming together to support each other.” Includes many relevant discussion topics and many heartfelt posts from the over 200 group members.
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.
Join the Community
Registering with our Cystic Fibrosis Community is fast and easy. Simply fill out the required information and then confirm your submission by entering in the two security words that appear in the text box. Soon you'll be part of our community!
