Cystic Fibrosis

What is CF?

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I was diagnosed a month after my first birthday – the day after Christmas, actually – and it came as a huge surprise to my family, which has no known history of CF.

What is having CF like?

The hallmark of CF is the colonization of bacterial Lung infections.

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The thick, sticky mucus allows the bacteria to take hold and colonize. When the bacteria start to multiply and causing symptoms of respiratory infection, such as increased coughing, wheezing, thicker and larger amounts of mucous and shortness of breath, the patient is said to be experiencing an “exacerbation”.

The second major area affected by CF is the GI system. Many patients, despite eating well, taking their enzymes, and taking supplement vitamins, end up having nutritional deficiencies. Many CF patients struggle with their weight as some point in their lives, some more than others.

The additional unpleasant side of malabsorption is that we often have a lot of “stomach issues” – foul smelling gas, bloating, cramping, nausea and diarrhea. These symptoms often occur suddenly, and not only can they be painful and uncomfortable, it can really be embarrassing when it happens and we’re out and about.

Life Expectancy

Because there are more than 1700 known gene mutations, not all CF patients have the same symptoms or severity of issues as others. At the current time, the mean life expectancy – meaning that half of all patients die before the age and the other half of all patients die after the age – is in the lower40s.

Can CF be cured?

There is currently no cure for CF. Lung transplantation can possibly offer additional years, but the rest of the body will still have CF. After lung transplant, the patient has a 50% chance of living another five years, but tranplantation is not a cure. There are many treatments aimed at easing the symptoms and treating acute infections, and for many CF patients, this offers a better quality of life.

For more information on how Cystic Fibrosis affects me, please refer to upcoming posts and archives, where I will discuss all of the above and more as it relates to my health and my life.

For additional information regarding cystic fibrosis in general, please visit the Cystic Fibrosis Foundation  at http://www.cff.org.

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