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How Do You Cope with CF?

What do you do to help you and your child cope with life with cystic fibrosis? Share your tips with other readers.

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What's in Your CFTR?

US Dept of Energy Genomes Program/http://genomics.energy.gov

Cystic fibrosis is a genetic disease, so why are some children born with CF when nobody else in the family has it? How can one sibling have CF while another one from the same parents doesn't? Brush up on the genetics of CF to find the answers.

Thinking About Genetic Testing?

Cystic Fibrosis Spotlight10

Cystic Fibrosis Blog with Lori Alma

Are Antibacterial Wipes Making Your House Dirty?

Sunday July 12, 2009
Photo © Ekaterina Bochkova

You’ve just finished wiping down every surface in your home with one of those nifty antibacterial wipes. You look around at all your sparkling surfaces, and you’re pleased with what you see. You walk away breathing a confident sigh of relief because you know that you have just singlehandedly exterminated every microbial threat to your family’s health.

I hate to be the bearer of bad news, but I have to tell you that – although you gave it a valiant effort – you may not have won the battle with germs just yet. In fact, you may have just unknowingly helped those tiny microscopic troops invade more areas of your home.

You see, not all antimicrobial wipes are created equal and studies have shown that some of them don’t actually kill germs but simply remove them from the surface you are wiping. Gulp. That’s right – those nasty little microorganisms might not be dead at all but just hitching a ride to the next stop.

Darn it! Those things were so handy and now I’ve gone and blown it! Relax. Don’t fret about it. I also have some good news. You can keep using those disinfectant wipes, you just have to make sure you’re using them properly.

Read the full article about The Right Way to Use Disinfectant Wipes

Photo © Ekaterina Bochkova | Dreamstime.com

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Obama Picks Noted Cystic Fibrosis Researcher to Head NIH

Wednesday July 8, 2009
Photo © Getty Images

Dr. Francis Collins is well known in the fibrosis community for the part he played in the discovery of the CFTR gene at the University of Michigan twenty years ago. Now, according to an Associated Press report, President Obama has named Dr. Collins as his choice to be the new head of the National Institutes of Health.

If Dr. Collins is confirmed by the Senate, the cystic fibrosis community will have a powerful advocate in Washington. The most obvious reason is that Dr. Collins is very aware of cystic fibrosis, and has dedicated many years to CF research. There is something that you may not know about Dr. Collins, though – something that could really make him an ace in the hole for those with CF.

In 2007, Dr. Collins wrote a book called “The Language of God: A Scientist Presents Evidence for Belief”. That’s right, Dr. Collins is a scientist and a Christian, and he believes that the two camps can and should coexist. He was among the supporters who were present in March when Obama signed an executive order in favor of stem cell research - - which some scientists believe could hold the cure to many diseases, including cystic fibrosis. But stem cell research has been stalled in recent years, largely because religion and science have not been able to find common ground in this area. Maybe Dr. Collins would be able to help us with that.

Photo © Getty Images

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Texas and Connecticut Get Off the Fence, Enact Mandatory Newborn Screening Laws

Tuesday July 7, 2009

Well, it’s official! The Cystic Fibrosis Foundation announced today that Texas and Connecticut have both finally passed laws requiring all newborns to be screened for cystic fibrosis (CF). Connecticut will begin screening in October, Texas in December. These were the last two states in the nation to mandate newborn screening for CF, so it’s a real cause for celebration! By the end of the year, every baby born in the United States will be screened for cystic fibrosis -- allowing those who test positive to reap the benefits of early detection and treatment.

Related Article:

How Newborn Screening Works

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Antibiotics Used to Treat CF Can Cause Hearing Loss

Friday July 3, 2009

The American Academy of Otolaryngology - Head and Neck Surgery (AAO-HNS) -- those are Ear, Nose, and Throat doctors in laymen’s terms -- has just published a study report indicating a possible link between aminoglycocide antibiotics and hearing loss in people with cystic fibrosis. Tobi (tobramycin), Arikace (amikacin), and gentamycin are the most common aminoglycocides prescribed to people with CF. These are important medications in cystic fibrosis treatment, and you shouldn’t be afraid to use them. What you should do is follow the AAO-HNS recommendations and have your hearing tested regularly if you do take aminoglycocides.

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