Living Life With Cystic Fibrosis

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.

Do you know what it’s like to live with cystic fibrosis?

As a kid, I had never heard of it at all. Then I became good friends with a woman caring for two children with it. I saw firsthand how challenging cystic fibrosis (CF) can be, as well as ways in which I could help as her friend and neighbor.

What is Cystic Fibrosis?

It’s a complex condition affecting approximately 30,000 adults and children in the US at any given moment. It’s also a lifelong disorder that affects patients’ daily life, and this includes everything from school to work to play and relationships. CF affects everyone differently, because systems and disease severity varies widely from person to person.* It primarily affects the respiratory and digestive systems. Living with CF can be isolating both to the patient, and to their parents/siblings/caregivers due to their increased risk of infection and cross-contamination. Many patients and their families/caregivers are isolated from others, and frequently report high levels of depression and anxiety. This can greatly impact disease severity and outcomes.

What is it like living with cystic fibrosis?

As the condition varies widely, so does its impact. It’s important to create as normal of a life as possible. Following a proper diet, doing at home therapy, administering medications, and doing everything possible to keep healthy will create the greatest environment for the patient, and their loved ones. Mary Frey, pictured above, was diagnosed at 7-weeks-old, and considers herself a full-time cystic fibrosis patient. She’s 26 now, and married, and works hard to take care of her body. Every day features vest airway clearance therapy, a few nebulized medications, and a handful of pills. She also gets on the elliptical as a form of airway clearance and to strengthen her body and lungs. She also takes five or six pancreatic enzyme pills with everything she eats. She goes to a CF clinic a couple of times each month to see a team of doctors, nurses, and a research coordinator, and they figure out plans of action. Mary also receives IV antibiotics to her lungs a few times a year.

I also read about Kristen.

Kristen was diagnosed only four years ago, at age 31. Her children, Tate and Layla, were diagnosed at 7 and 3. Kristen considers herself an example for her children, hoping that the exceptional care she takes of herself will inspire them to follow in her footsteps. This family’s days consist of dozens of medications, running nebulizers, constant sanitation, and lots of food. They exercise as well. They choose to make a positive impact, instead of focusing on the pain or restrictions of CF.

What can you do to help?

First, learn about CF. I learned a lot from my friend’s children, as well as a friend caring for her mother with it. Like Kristen’s family, you can make cards and gift baskets for children in the hospital. Recognize that it’s not just the patients, but it’s the families affected as well. You can learn more about Walgreens CF Champions “Navigating The Journey Together.”

They have learned to make the most of each day, by sharing stories, advice, and inspiration with people around the world. You can read their stories, learn from them, and share them. The program aims to share important lessons about living with or caring for someone with CF by learning how to properly administer medications, and how to live well with the condition.

For more information about CF Champions and “Navigating The Journey Together,” visit Walgreens to find out more.

*(Source) CysticFibrosis.org.uk

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