GREAT STRIDES

This coming Saturday, May 9th, Jordan and I will be taking Great Strides to help the Cystic Fibrosis Foundation raise money for the research and development of a cure for Cystic Fibrosis. The GREAT STRIDES walk (for the Oklahoma City area) will be held at the Myriad Botanical Gardens in Bricktown in downtown OKC. Check-in for this walk is at 9:00, while the actual walk doesn't start until 10:00. It will be a short walk (about 1/2 - 1 mile) around the garden area, and lunch will be provided by the Norman Pita Pit to those who participate. If you're interested in joining, contact me, and I can sign you up as a member of my team, or, if you prefer, just show up!! There is no "entrance/registration" fee, however, sponsorship is encouraged...that's how they are raising money for the cure.

If you are unable to participate in the walk, but want to help sponsor my team by making a donation, you can do so by donating at this website: http://www.cff.org/great_strides/AshleaThiel

You might be wondering why I've chosen this "cause" to support, and how did I even hear about this fatal disease. Why do I care about this? The reason I support the CF Foundation is because my younger brother has been living with Cystic Fibrosis his whole life. This means that he has had numerous lung infections and hospitalizations, and a few times we honestly didn't think he would come home from the hospital. He's had a lot of health problems come up because of this disease as well, and I'm hoping that someday soon they will find some way to cure this disease.

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If you'd like to know more, here's some info on CF from the Cystic Fibrosis website:
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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. When mucus clogs the lungs, it can make breathing very difficult. The thick mucus also causes bacteria (or germs) to get stuck in the airways, which causes inflammation (or swelling) and infections that lead to lung damage.
Mucus also can block the digestive tract and pancreas. The mucus stops digestive enzymes from getting to the intestines. The body needs these enzymes to break down food, which provides important nutrients to help people grow and stay healthy. People with cystic fibrosis often need to replace these enzymes with medicine they take with their meals and snacks, which helps them digest food and get proper nutrition.

What is a typical day for someone with CF?

Because the severity of CF differs widely from person to person, and CF lung infections flare up from time to time, there is no “typical” day. However, each day most people with CF:

• Take pancreatic enzyme supplement capsules with every meal and most snacks (even babies who are breastfeeding may need to take enzymes).
• Take multi-vitamins.
• Do some form of airway clearance at least once and sometimes up to four or more times a day.
• Take aerosolized medicines—liquid medicines that are made into a mist or aerosol and then inhaled through a nebulizer.

What is the life expectancy for people who have CF (in the United States)?

There is no way to accurately predict how long a person with cystic fibrosis will live, as many different factors affect a person’s health. Severity of disease and time of diagnosis are two such factors. Many people have a mild case of CF, while others can have moderate or severe cases.
In addition, some adults with cystic fibrosis have only recently begun to use new treatments, while an infant diagnosed at birth will have the advantages of starting specialized treatments that were not available even a decade ago.

Data from the CF Foundation Patient Registry, a tool that tracks health statistics from patients treated at CF Foundation-accredited care centers, shows that more than 45 percent of all people with CF in this country are 18 years or older. Also, the Foundation calculates the median predicted age of surviva for people with CFl. This number is based on a statistical method of using life table analyses developed by insurance companies to calculate trends in survival.

In 2008, the median predicted age of survival rose to 37.4 years, up from 32 in 2000. The median predicted age of survival is the age by which half of the current CF Patient Registry population would be expected to survive, given the ages of the patients in the registry and the distribution of deaths in 2008. The steady rise of the median predicted age of survival suggests how improvements in treatment and care are advancing the lives of those with CF.

In 1955, children with CF were not expected to live long enough to attend grade school. Today, thanks to continued Foundation-supported research and specialized care, an increasing number of people with cystic fibrosis are living into adulthood and leading healthier lives that include careers, marriage and families of their own.