About Cystic Fibrosis

About Cystic Fibrosis

Cystic fibrosis (CF) 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 irreversible lung damage and eventually death.

Normal vs CF lungs
Normal vs CF lungs

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.

The Cystic Fibrosis Foundation (CFF) is a nonprofit donor-supported organization dedicated to attacking cystic fibrosis from every angle. They are the world’s leader in the search for a cure for cystic fibrosis. They fund more CF research than any other organization, and nearly every CF drug available today was made possible because of Foundation support. Their focus is to support the development of new drugs to fight the disease, improve the quality of life for those with CF, and ultimately to find a cure. Visit http://www.cff.org for more information.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. However, 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.

About Isla and Isla’s Inspiration

Isla, a 10 year-old Burlington, NC resident, was diagonsed with CF when she was just 4 months old. Most people might never guess that she is sick but for Isla having CF means spending at least 2 hours a day doing breathing treatments and chest physical therapy. She swallows nearly 40 pills every day. In addition, Isla has had numerous bronchoscopies and hospital admissions to treat serious lung infections and every other month, she braves long appointments at the hospital with lung function tests, blood draws, X-rays, and cultures. Isla has also participated in numerous clinical trials for potential CF therapies sometimes requiring feats that would be difficult for most adults.

lung function tests   IMG_0707

For Isla’s parents, CF means time spent sterilizing equipment, making sure they are stocked in medicines and supplies, fighting with insurance companies, cajoling Isla into doing her treatments, and holding her hand during those difficult, scary times at the hospital. It also means meticulously planning every trip out of the house so that they have all her treatments done and have all the medicines they need. And it also means a near constant state of fear and worry. Every time Isla coughs they wonder if it is the start of an infection that she won’t be able to beat. Their strict compliance to Isla’s therapies have worked to keep Isla healthy and prolong her life, but ultimately, the current treatments won’t save it.

In 2008, Isla’s parents began a fundraising team through the Cystic Fibrosis Foundation called Isla’s Inspiration. They chose that name because Isla is certainly an inspiration to those who know her, but inspiration also means “to breathe” and that will come to be Isla’s biggest battle. To date, Isla’s Inspiration has raised over $220,000 for the Cystic Fibrosis Foundation.

Isla's Inspiration 2009
Isla’s Inspiration 2009

One of the main obstacles that the CF community faces is raising money to keep the research and clinical trials going. Even though the CF Foundation is a comparatively smaller charity it has done great things! Very recently we have been given hope that we are getting closer to a cure for CF. Your donations mean continued progress and proven improvement in both quality and quantity of life. Your donations really do make a difference! So please join us at our race, make a donation, and help us grow by asking your friends and family to particpate too.

If you added up all the time Isla has spent treating her disease it would equal an entire 10 months! And Isla is only 10 years old.

Donate to our team by clicking the image below.

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Helping to blow cystic fibrosis away