Tuesday, May 4, 2010

Be Aware, Be Very Aware

Dear Friend,

I'm sorry for the long absence. My only excuse is every day life. But, I come to you today to discuss a topic that is not every day life for most people, but does affect the every day life of approximately 30,000 Americans. I'm talking about Cystic Fibrosis or CF.

Why am I discussing this now? May is Cystic Fibrosis Awareness Month.

Why does this matter to me? My younger sister, Ashley, is 22 years old and fights Cystic Fibrosis EVERY DAY! I will discuss more of her story at a later time.

What is Cystic Fibrosis? Cystic fibrosis is a life-threatening genetic disease that causes mucus to build up and clog some of the organs in the body, particularly the lungs and pancreas. The build-up in the lungs can cause lung damage, which in turn can lead to a need for a lung transplant. So, that's the professional explanation of it. Plain and simple? CF is a genetic (meaning passed down from parents) disease that affects most of a person's body. A person with CF usually has some kind of breathing problems, including but not limited to Asthma and frequent lung infections, like bronchitis. CF also affects the digestive system due to the extra build-up of mucus preventing digestive enzymes from getting to the intestines. The body needs these enzymes to break down food, which in turn prevent the body from getting the nutrients that a body needs to stay healthy. (This is actually a VERY basic explanation. I will provide links at the end of this post where you will be able to find more information.)

How does a person get CF?
Plain and simple? Again, it is a genetic disorder, which means that a person can only get it from their parents. In saying that, the parent does not have to actually have CF themselves to pass it on. A person with ONE CF gene is a carrier and can pass it on. A person with TWO CF genes actually has CF. In order to have CF, a person has to get ONE gene from EACH parent. A parent can only pass on one gene, even if the parent has CF and two genes. So, look at the diagram below: Two parents who each have a CF gene have a 1 in 4 chance of having a child WITH CF, 2 in 4 who will be carriers, and a 1 in 4 who will not have CF or be carriers. Obviously, the chances of being a carrier lessen when only one parent is a carrier and there is no chance of a child having CF.
What are symptoms of CF?
The most common symptoms are:

  • Very salty-tasting skin

  • Persistent coughing, at times with phlegm

  • Frequent lung infections, like pneumonia or bronchitis

  • Wheezing or shortness of breath

  • Poor growth/weight gain in spite of a good appetite

  • Frequent greasy, bulky stools or difficulty in bowel movements

  • Small, fleshy growths in the nose called nasal polyps
Now, in saying that, there are over 1,400 separate mutations of the CF gene, so the severity of the symptoms or actual appearance of certain symptoms vary.

What is the average life expectancy of a person with CF? As of 2008, the average life expectancy rose to 37 years. In 2000, the average age was 32 years. This is due to all of the new research that is being done to find a cure for Cystic Fibrosis!

One little statistic for you: More than 70% of patients are diagnosed by age two.

So, please, help us find a cure for Cystic Fibrosis! You can support a Cure for Cystic Fibrosis by going to the Cystic Fibrosis Foundation Website.

*I found most (if not all) of my information on the Cystic Fibrosis Foundation website. All generalizations were taken from my experience growing up with a sister with Cystic Fibrosis.

1 comment:

  1. my prayers are with Ahley and your family... My good friend Jenn has CF..and it's a struggle....hugs!!!!