May Is Cystic Fibrosis Awareness Month

About 30,000 children and adults in the United States suffer from this chronic disease that affects the lungs.

by Sabrina Walker • Member { View Profile }

May is Cystic Fibrosis Awareness month so I wanted to share my story and spread awareness on this genetic disease. 1 in 30 people are carriers of Cystic Fibrosis. Two people who both have the gene have a 1 out of 4 chance that their child will have Cystic Fibrosis.

Cystic fibrosis is an inherited chronic disease that affects the lungs and digestive system and causes thick, sticky mucus to build up in the lungs, digestive tract, and other areas of the body. That type of environment is perfect for bacteria to thrive and create scar tissue and lung damage in CF patients. About 30,000 children and adults in the United States (70,000 worldwide) suffer from this disease, and the predicted median age of survival for a person with CF is in the late 30s.

My name is Sabrina Walker, I am a 26-year-old female, I have Cystic Fibrosis, and I am also a cancer survivor. I was born and raised in Anchorage, Alaska and am one fourth Tlingit Indian. I was born in an Indian Health Services hospital in Anchorage and was not diagnosed with CF until I was 4 years old. It is very rare for people who are Native American/Alaska Native to have CF so it took a few years for doctors to diagnose me with CF.

I was very active through out high school. I ran competitively in cross-country running,  track and field, and I also did hockey and was a cheerleader. My senior in high school was when I started experiencing severe back pain. A few months after graduation from high school a tumor was found on my spine, and I was diagnosed with Non-Hodgkin’s Lymphoma. At that time, I went through rigorous treatments of chemotherapy and radiation. Going through chemotherapy was very tough on my body, and I ended up with pneumonia and had to do at home tune-ups in between each chemotherapy treatment. I recovered and have been in remission for seven years.

I started going to the University of Alaska at Anchorage eight months after my treatments to pursue a degree in elementary education. I transferred to the University of Colorado at Denver and graduated with honors from UCDenver with my degree in elementary education. 

I now live back in Anchorage, Alaska. I decided to not pursue education because it was difficult to be around all those germs and maintain my health at the same time. I now work at a non-profit Alaska Native art gallery.

I started running again, during my junior year in college. I now run in 10 to 15 races a year. These races include three to four half-marathons, 10k's, 5k's, and a 16-mile trail run called Lost Lake. Lost Lake is 16-mile trail run in Seward, Alaska. The proceeds go to the Cystic Fibrosis Foundation. Last year I organized a team for that race called “Sabrina Fights CF.” My team raised over $13,000, and I won the Marsha Vincent Award because I raised the most money for Lost Lake. 

This year my team has grown from 18 people to 30 people, and I plan on beating my previous Lost Lake time of three hours and eight minutes. I hope to raise just as much money this year. I enjoy running in races and raising money for Cystic Fibrosis. I am hopeful for a CF cure in my lifetime.

I believe that running or jogging regularly can help stem the negative affects of CF. While there are many medical techniques that help my lungs stay healthy, I have found that running, for me, has been the best airway clearance. I also attend bootcamp twice a week to help with my strength training. I also want to inspire others with CF to exercise. It is an essential part of staying healthy, and we need to do everything we can to survive. I know that exercise is essential, and I believe in being an advocate to those with CF. I also write a blog about running and having CF.

I am looking into different ways to raise money and to participate in runs that benefit CF. I would eventually like to start my own run in Anchorage, Alaska where the proceeds would go toward CF and promote awareness of CF. I would like to run in a full marathon by the end of 2014. I would also love to set a distance (similar to the more than just miles concept) and run that distance and raise money along the way. 

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