Rounding out Cystic Fibrosis Awareness Month

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.

I’m in my fourth year(!) now in my “new” job. Many of you have followed my ups and downs as I navigated the path of becoming a working mom after years of being at home raising my kids. Some things surprised me, like how much I would love going to work every day. But what really surprised me was the love and care and concern I would feel for the people that I help serve: they cystic fibrosis community.

During my time in my job, I have learned a lot  about CF. Here are the basics: (from the Cystic Fibrosis Foundation website)

Cystic fibrosis is a progressive, genetic disease that causes persistent lung infections and limits the ability to breathe over time.

In people with CF, a defective gene causes a thick, buildup of mucus in the lungs, pancreas and other organs. In the lungs, the mucus clogs the airways and traps bacteria leading to infections, extensive lung damage and eventually, respiratory failure. In the pancreas, the mucus prevents the release of digestive enzymes that allow the body to break down food and absorb vital nutrients.

Symptoms of CF

People with CF can have a variety of symptoms, including:

  • Very salty-tasting skin
  • Persistent coughing, at times with phlegm
  • Frequent lung infections including pneumonia or bronchitis
  • Wheezing or shortness of breath
  • Poor growth or weight gain in spite of a good appetite
  • Frequent greasy, bulky stools or difficulty with bowel movements
  • Male infertility

But what I really have learned is that people with CF are just that, people. And they each are affected differently by their CF. I have had the pleasure of getting to know adults living with CF, who are raising families of their own. I have gotten to know young families raising siblings with CF, and I have heard stories of struggle and heartache and yes, even overcoming.

The prognosis for a child diagnosed with cystic fibrosis is now better than ever thanks to new medications that have recently come down the pipeline. People with CF take 40 to 60 pills a day! This is a combination of antibiotics, enzymes to aid in digestion, vitamins and medications to manage the symptoms of CF. These individuals also use a percussive vest to “shake” the sticky mucus out of their lungs twice a day and have breathing treatments with several different inhaled medications. During periods of illness, these breathing treatments can increase to three times a day or more.

The great news is, the sooner there is a CF diagnosis (yay for newborn screening!) the sooner treatment can begin. In general, the better adherence to daily medications and treatments, the healthier the person. (of course, every case of CF is unique.)

As you can see, managing this medical care takes dedication on the part of patient and caregiver alike! I like to envision these parents and spouses as part of a team, and they help navigate the waters of cystic fibrosis together.

What is nice, is that families living with CF don’t have to go it alone. There are many organizations ready and willing to lend a hand in several different ways, including social/emotional and financial support. The organization that I work for specifically helps families living in North Dakota. There are other organizations such as the Walgreens CF Champions Program .

The CF Champions Program’s motto is “Navigating the Journey Together”, and is an apt motto. We know that the CF journey si not one to be traveled alone. It can be scary, and expensive and even harrowing, but there IS help for families living with and fighting CF, there are medical advances on the horizon and no one has to fight this battle alone!

Walgreens Cystic Fibrosis Services is a specialty pharmacy with the ability to manage your prescriptions and have medications sent right to your door. Some of the services they provide are:

  • Easy, 24/7 phone and online account access & refill ordering
  • Convenient delivery of CF medication to your door, including refrigerated medications
  • Orders are typically shipped within two days after we receive your order. We also offer overnight shipping for refrigerated items like Pulmozyme® and TOBI®
  • Prescription reordering—we’ll call your doctor after they expire or you run out of refills
  • Help finding patient assistance options when available
  • Help navigating insurance plans and getting the most out of your coverage

If you have someone you love that has CF, check out what the Walgreens CF Champions program has to offer!

 

 

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