This post was sponsored by Walgreens Cystic Fibrosis Services as part of an Influencer Activation for Influence Central. I received compensation as a thank you for my post.
A few weeks ago I was asked to partner with Walgreens Cystic Fibrosis CF Champions Navigating the Journey Together program to help raise awareness for CF Awareness Month (which is also the month of May). I was eager to help spread the word and raise awareness for CF as my nephew is a carrier for CF and I have two good friends who have a child with CF.
What is Cystic Fibrosis (CF)?
Cystic Fibrosis (CF) is a complex condition affecting approximately 30,000 adults and children in the US at any given moment. 1 CF is a lifelong disorder that affects patients’ daily life, including everything from school to work and personal life.
CF primarily affects the respiratory and digestive systems. 1
Due to their increased risk of infection and cross-contamination, many patients are isolated from others 2 Patients frequently report high levels of depression and anxiety, which can greatly impact disease severity and outcomes, actively following medication regimens and understanding of CF.1
Those living with CF need medical attention and the importance of medication adherence can help lead to better health outcomes and improved life experiences. Each person lives with Cystic Fibrosis (CF) differently, as symptoms and disease severity can vary widely from person to person. Walgreens Cystic Fibrosis Services have a program called CF Champions “Navigating The Journey Together”. Their goal is to help those with Cystic Fibrosis navigate the journey together: insurance help, financial assistance, local advocates, medications & therapies and services.
My friend Alma is mom to Jack who is 10 years old. He has CF. She shares that it is extremely important for a person with CF to adhere to the med routine. Each medication has a specific purpose, whether it be a daily vitamin, high dose ibuprofen for swelling or more complicated inhaled medication to keep lung function healthy, missed doses can be the proverbial two steps backwards.
“For us…Jacks daily pills are put in pill holders for morning and night and are filled weekly. Although he is only 10, I felt it was important he learn some independence and have access to getting the meds himself. Inhaled meds I help with but he does know what is used for day and night inhalation. During the school year, enzymes are sent to school and he reports to the nurses office. They are taken before every meal and snack.”
Daily difficulties may include overheating in the hot summer weather. CF’ers have an issue with sweating out their salt so lots of water and sports drinks are needed. Being aware of the people around you. Are they sick? Strangers that are smoking? Someone with a wet cough? Jack at 10 is the like an elderly person on the inside. A simple cold could turn into a 3 week hospital stay and many extra drugs on top of his normal routine.
Although he is medically fragile, I help him live with CF by treating him like a normal child. He knows he is in some ways different but I remind him he can do whatever he wants. I monitor him medically but him being a normal 10yr old boy is very important. His life is interrupted with around 1.5 hours of medical “stuff” per day but other than that, he’s a happy normal boy.
Join the cause to help find a cure for CF with Jack’s Cycle for Life fundraising page.
As a mother, I am passionate about making sure our children live a healthy, active normal life.
As a runner I value being able to breathe… and run. I take it for granted. I need to breathe.
Cystic Fibrosis weighs heavy on my heart and I support Walgreens CF Champions – Navigating The Journey, Together cause that helps those who have CF.
Sources:
1. Cystic Fibrosis Foundation. Patient registry annual data report 2013.
https://www.cff.org/2013_CFF_Patient_Registry_Annual_Data_Report.pdf. Published October, 2013. Accessed November 3, 2015.
2. Wohletz MC. Cystic fibrosis: optimizing outcomes via team-based care. Pharmacy Practice News. www.pharmacypracticenews.com/SE2014. Published November 2014. Accessed October 23, 2015.
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