Adults with cystic fibrosis face some unique challenges. Two of those challenges, nutrition and infertility, will be the topic of a web seminar that will be presented on February 3rd by the Cystic Fibrosis Foundation (CFF). The live web cast, which will include a question and answer session with the presenters, is free and open to anyone but pre-registration is required. Visit the CFF website to register.

Before attending the seminar, learn the basics about nutrition and fertility in CF.

You know your own body better than anyone. Unfortunately, health care providers tend to forget that sometimes. I’ve heard many stories from patients who say that their providers have brushed off their concerns and not taken them seriously at one point or another in their relationship. A newly published study of people with cystic fibrosis gives even more evidence about the importance of patients’ reports of their own condition.

The study began in 1996, when 223 adults with CF were asked to complete a questionnaire about their perceived quality of life. Ten years later, the outcomes of the participants were evaluated. 66 of them had died, 3 were lost to follow-up, and the rest were still living. When the researchers analyzed the data they found that the quality-of-life questionnaires were the most accurate predictors of survival -- even more accurate than pulmonary function tests, the standard tool used to predict survival in those with CF.

More about pulmonary function tests.

Pseudomonas aeruginosa, the bacteria that causes life-threatening lung infections in those with cystic fibrosis, is easily recognizable by the characteristic green sputum. The green color is caused by pigments called phenazines. Up until now, phenazines were thought to be an antibiotic produced by P. aeruginosa to kill competitive bacteria. Now, thanks to researchers at MIT, we know that phenazines are actually molecules that act as signals, allowing the bacteria to find each other and cluster together. The MIT researchers are hopeful that that this new knowledge will lead to the development of a substance that can interfere with the signaling ability of phenazines and prevent P. aeruginosa from organizing into large colonies.

More about P. aeruginosa.

If you’re going to be in the Glenville, Illinois area in February, you have an opportunity to attend a one day seminar called The CF 500: A Lifelong Race. The seminar, which is sponsored by the Cystic Fibrosis Institute, will be held on February 7, 2009. This is a great educational opportunity for those with CF or those who want to learn more about living with CF. There is a small registration fee, which will be increased after December 31st. More details about the conference and registration available in the forum.