Thousands of Americans have Cystic Fibrosis. Since this month is Cystic Fibrosis Awareness Month,
many people are working to bring attention to the disease which is more common than you may think.
We learned about a woman who is navigating through her every day life living with Cystic Fibrosis.
Approximately 30,000 people in the U.S. have the genetic disease, which mainly affects the lungs and digestive system and affects people’s vital organs differently.
“It causes changes within the lungs and permanent lung damage. It can cause changes in the sinuses, changes in the liver, changes in the stomach and gut, pancreas. So virtually every organ, particularly those that may be more moist,” said Deb Fueller, the Cystic Fibrosis Clinic Coordinator for CHI St. Alexius.
39-and-a-half-year-old Mandy Anderson, from Mandan, has been living with the illness her entire life.
Each day she has to do breathing treatments morning and night and takes medicine with every meal, helping her digest it better.
“Before Trikafta, I was actually having to do three treatments a day just to maintain a normal energy level and I think that’s the thing that is probably the most surprising as I age with Cystic Fibrosis is how much energy it takes to do normal things,” explained Anderson.
Over the years, the average age life span for those with Cystic Fibrosis continues to rise.
Fueller, who runs Cystic Fibrosis Clinic for CHI St. Alexius, believes technology and medications have played a huge role.
“Looking back you can see that originally children didn’t live beyond their first year and then a few years later it was five to 10 years. Then a few years later it was 18 years. And then now aren’t we blessed. 38 years plus,” explained Fueller.
Anderson says over the years living with the disease has become like brushing her teeth, just part of her routine — but over the last few years, she has truly become an advocate and uses her voice to bring awareness.
“I would tell people with CF to first of all not, not be afraid to voice their fears, to lean into the support of a mental health professional and to lean into the support of their CF team. And do everything they can to have a healthy body so that they can have the best quality of life available to them,” shared Anderson.
Anderson says living with Cystic Fibrosis isn’t just about the treatment but also living a healthy lifestyle.