Friday, January 29

What is Cystic Fibrosis?

Do you want to make a difference in someone's life?  Do you want to help make someone's quality of life better?  Keep reading, Cystic Fibrosis is a genetic disease that affects around 1,000 more people each year. 

Do you know what cystic fibrosis is?  "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. When mucus clogs the lungs, it can make breathing very difficult.  Mucus also can block the digestive tract and pancreas. The mucus stops digestive enzymes from getting to the intestines.

People with CF can have a variety of symptoms, including:

very salty-tasting skin; persistent coughing, at times with phlegm; frequent lung infections; wheezing or shortness of breath; poor growth/weight gain in spite of a good appetite; and frequent greasy, bulky stools or difficulty in bowel movements.

Statistics about cystic fibrosis:
About 1,000 new cases of cystic fibrosis are diagnosed each year.
More than 70% of patients are diagnosed by age two.
More than 45% of the CF patient population is age 18 or older.
The predicted median age of survival for a person with CF is more than 37 years.

How can people help to advance science/research/support?

Cystic fibrosis research is a team effort. Scientists across the world are working to understand and beat this complex disease, with the hope that one or more of the many approaches to therapies will lead to a cure.

You can help advance CF research in several ways:
Make a Donation – Money buys science and science buys life.
Join a CF clinical trial.
Contact your local CF Foundation chapter and volunteer. Learn about the many special events that raise the money to keep the science moving ahead!
Become an Advocate and raise awareness – help educate your elected officials about CF"

All of this information was taken from the Cystic Fibration Foundation website at http://www.cff.org/

To make a donation go to http://www.cff.org/GetInvolved/ManyWaysToGive/MakeADonation/

Did you know that this disease affects the entire body?  The lungs are the most noticeably affected, but look at this chart to see all the other areas that are affected::

3 comments:

  1. Hey! Just discovered your blog when I was trying to search for events in Hawaii that benefit cystic fibrosis. My sister had it and I'd love to get involved...thanks for drawing light to this disease and I wish your boyfriend the best of luck and good health. If you hear of any events going on, please let me know!

    Krystal
    allen_krystal@hotmail.com

    ReplyDelete
  2. Hi Krystal!

    So glad you found me. I will keep you updated if I hear of anything else going on in Hawaii. The cystic fibrosis community is pretty small here... :) Thank you for the good wishes.
    Katie

    ReplyDelete
  3. i have read it carefully and also want to know more. waiting for your next blog,events in Hawaii

    ReplyDelete

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