Saturday, May 17, 2014

Cystic Fibrosis


If you know anything about my book, Changing Fate, you know it's about a girl with cystic fibrosis. Since this month is Cystic Fibrosis Awareness month, I thought I'd expound on the topic. The facts listed are taken from the Cystic Fibrosis Foundation website.

30,000 children and adults in America have CF with the worldwide total estimating around 70,000. 

It's a genetic disease that causes the body to produce thick, sticky mucus--which leads to lung and pancreas problems. 

About 1,000 cases of CF are diagnosed each year.

Nearly half the CF population is age 18 or older. 

That's HUGE! If we go back 60 years ago, few children born with CF lived to attend elementary school. With new research and treatments, people with CF can expect to live into their late 30's, even into their 40's, or longer! 

But the reality is...there's STILL no cure! A lifetime of daily treatments is not only costly, but it's exhausting. 

While writing my book, I worked with some amazing people and parents of children with CF, who've been through transplants and years of treatments. 

Now, every case is different. One girl I worked with said three of the five kids in her family were born with CF. Between those three, the affects of the disease are very different from one child to another. The story I wrote might not match each person, but I hope it can spread the word and help others become aware of the struggle some people go through just to breathe. 

It's good to be aware and help where you can :)

One celebrity made a life changing decision because of her experience with 2 CF kids. Go here to watch Whoopi's story on the Dr. Oz show.

I hope in some way, I can continue to spread awareness and maybe help in the cause to find a cure.

3 comments:

  1. Yes, it would be great to find a cure for this. Spreading awareness is an important step in doing that! Keep up the good work. :) And hi!! Hope you're doing splendidly.

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  2. Wow! I admit, I don't know enough about cystic fibrosis. I'm very excited about your book. What an amazing opportunity to share about something so important and work with such amazing people. Can't wait to read it!

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  3. They really have made huge leaps with medical treatments for CF. Not that I'm an expert by any means, but my brother's best friend growing up had it (and he's since died from it) and a friend of mine who also has it just turned 30, which I know is HUGE! So glad you're spreading awareness!

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