Cedar Haven Cares: Cystic Fibrosis

May is Cystic Fibrosis Awareness Month. Marie Anderson, Director of Therapeutic Recreation at Cedar Haven, shared some information with us about Cystic Fibrosis in order to help raise awareness about this disease. Her son Douglas was diagnosed with Cystic Fibrosis at 6 weeks old. Looking at Douglas you would think he is your average 5-year-old. However, he takes anywhere from 25-30 pills a day, a minimum of 2 nebulizer treatments and two airways clearing treatments a day.

The Carl’s Crazy Crusaders Team at the 2015 Great Strides Walk for Cystic Fibrosis

So, what is CF? Cystic fibrosis (CF) is a disorder of the cells and the most common, fatal hereditary disease in our country. Lung tissue is greatly affected by a thick mucus substance, which also makes it difficult for individuals to absorb important nutrients. Some common symptoms experienced by those with CF include: salty-tasting skin, foul-smelling stools, persistent cough, wheezing, clubbed fingers, digestive disorders, smaller than average in height and weight, male sterility, diabetes and, liver disorders. More than 30,000 children and adults in the United States have CF and more than 70,000 people have been diagnosed with CF worldwide. Advancements in available treatments have made a big difference for people with CF. Now almost 50% of people with CF are over the age of 18. Many people with CF can now expect to live healthy, fulfilling lives into their 30s and beyond.

Marie has coordinated a number of fundraiser initiatives at Cedar Haven in an effort to raise awareness about this disease and the impact it has on families like hers while also raising critical funds for ongoing research. Over the past few months, Marie has raised $1,800+ through a Lularoe fundraiser and additional funds with Cedar Haven dress down days (in which team members pay $1 to wear more casual clothes to work), and several food sale fundraisers. Next week a sub sandwich sale will begin at Cedar Haven on Monday.

“At some point in our diagnosis, I realized that a cure might be a fairy tale, as it’s unlikely that they will find a cure in my son’s lifetime,” said Marie. “But the reality is that new treatments have already given him a better quality of life. We are able to add new medications next year that will continue to improve his quality of life. I know that without the Great Strides walk, that wouldn’t be possible. We are thankful for the little things and the support from the community.”

The local Lebanon Great Strides Walk will be taking place on Saturday, May 6th. You can sign up for the walk, learn more, and make a donation on their team page here: Great Strides Walk Lebanon 2017