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Thriving with Cystic Fibrosis

May is National Cystic Fibrosis Awareness month, so we thought it would be a great idea to highlight an amazing man who founded an innovative foundation to empower those with CF … which includes him. Brian Callanan started the Cystic Fibrosis Lifestyle Foundation (CFLF) in 2003 with the idea of helping those living with Cystic Fibrosis learn about the importance of lifestyle choices.

OWG: I understand that you are living with CF but you maintain a very active lifestyle. What is CF and how do your lifestyle choices help you manage your disease?brian

Brian: CF is a genetic lung disease affecting approximately 30,000 Americans with chronic airway congestion, lung infections, digestive difficulty, reproductive problems and is commonly associated with the onset of CF related diabetes, failure to thrive, depression and other risky behavior.  This is a relatively tiny population of patients, but the reaches of those it affects reaches far and wide.

I was born with CF in 1976, when the average life expectancy was 8-years-old. When I was just a child, the discovery of the CF genetic map brought new promise for a cure that was expected within 5-10 years. While this created an incredible ‘carrot and stick’ approach to keeping my lungs as healthy as possible, it also became a difficult reality when a cure did not come about 10, 15, or even 20 years later.

The reality sank in that while this very well MAY be a permanent part of my life, my mild severity and the way I took care of myself dictated a very strong likeliness of a long life (if I played my cards right).

In my senior year at St. Michael’s College in Vermont, I wrote a psychology term paper entitled, “A Psychosocial Autobiography: CF in Mind and Body.” With this reflection, I discovered how critically important one’s mindset was in accepting and dealing with this condition on a daily basis, for life.

My interest in running, skiing, hiking, sailing, swimming, snowboarding, rock climbing and other fun activities not only helped me with clearing my airways, but also provided a sensation of fun, adrenaline and achievement. Doing these things also helped develop a strong social network of friends that I learned to trust about my CF, and these friends would become part of my support and accountability for how I take care of myself.

OWG:  Tell us about your organization. How did it get started and what do you do?

Brian: I created the Cystic Fibrosis Lifestyle Foundation to share with the CF community the knowledge and importance of living a healthy and active lifestyle if there were any chance of surviving CF until a cure comes about. With this mindset, I prefer to use the phrase “living successfully with CF.”  So in 2006, with the help of six companions, I rode my bicycle from the Canadian boarder in Maine to Key West, FL to not only raise awareness and funds, but to also push the limits to the CF community of what was once thought impossible.

The mission of CFLF is to assist in providing avenues toward healthy and active lifestyles through recreation, thereby educating people with CF on the critical psychological, social and emotional connections between their lifestyle and their health. Currently this is done by awarding Recreation Grants to individuals with CF across the country in order to provide direct financial assistance toward activity based costs, such as gym memberships, sports camps, dance, yoga or pilaté classes, horseback riding or rock climbing, amongst many other activities.

OWG:  We noticed your tagline is “Living Stronger! Living Longer!”  How do you think a healthy life helps those with CF do that?

Brian:  Helping people with CF toward “Living Stronger! & Living Longer!” is not only the vision of CFLF, it is a fact of the CF community. The average life expectancy has increased in my lifetime almost three decades to now being 37 years! Advancements in medicine and technology have enabled a whole new population to exist today – adults with CF.

With the development of this population, the transition from childhood to adulthood becomes an ever more critical period when tools need to be acquired to learn how to deal with this condition mentally, socially and physically. The goal of this vision is to not only create stronger tools and means of living successfully with CF, but also help as many people as possible stay healthy and strong enough that they will live long enough to one day see a cure. I believe that staying active literally saves my life. There are so many factors that are critically important to living successfully with CF.

The first and most obvious is that being active is helpful in keeping the airways less congested with mucus. The build up of thick and sticky mucus is a prime breeding ground for the growth of bacteria, especially multi-resistant bacteria that can cause serious lung infections and possibly a much shorter lifespan. Airway clearance is the first and foremost important aspect of managing CF.

The second, yet no less important, aspect of this disease is maintaining a positive mindset and attitude in accepting and dealing with the daily demands of this disease. There is not often good news in the gradual progressive nature of CF, and so the importance of mental well-being can often dictate one’s choice to adhere to treatments and medications. Doing Chest Physical Therapy (CPT) to shake mucus lose and take handfuls of pills at every meal is tedious, tiring, and can be embarrassing to some.

Fun is something that CANNOT be underestimated. There is both physical and mental benefit to having fun, and the two are intimately intertwined. For me, being active in recreational activities that are fun make me want and need to be healthy, which is my reason to do the parts of my healthcare that are not as fun.

Being active also gives me greater physical strength, releases endorphins to keep any depression at bay, and brings friends into my life in a supportive and trusting way. CF is not something that can be done alone, and for me, activity is the door that lets people in. So again, being active saves my life in many ways, and it is important to me to not only live this message, but to share it with others whose lives it may save as well.

OWG: What are some of the success stories that you’ve seen?

Brian: In our first year of providing recreation grants, we helped a teenage boy to further pursue his passion in snowboarding. He was living with his single mom, who had difficulty affording this potentially costly sport. He was able to go one day per week with his school to the mountain, where he was able to find a level playing ground with his peers.

CFLF was able to get a remaining season pass donated from his local mountain, which enabled him to go as much as he wanted for the rest of the winter. Over those several months, he found himself not only developing much stronger relationships with the friends he was able to spend more time with, but also found he was absent from school a lot less due to sickness. A subsequent result was that he was not only finding greater confidence in his academics with less interruption, but also in his relationships from being able to lead a more consistent social life.

Because the season pass had been donated from the mountain, he was still able to use his awarded grant to help pay for soccer and baseball camp during the summer which furthered his involvement in friendships and more team activities in school. His life was affected, and he got to experience the powerful benefit of recreational activities that he already knew was there if he could access it.

OWG:  What’s your favorite healthy snack?

Brian: With CF, there is a double edge sword of digestive difficulty. Due to enzyme insufficiency, only 25-50% of calories taken in are absorbed and utilized. Therefore, a high calorie, high protein, high carb, and low fat diet is common. So there are many foods that I truly enjoy. The most accessible and I find most beneficial is having a big bag of trail mix (GORP-mmmm) in my car at all times (Gold Ol’ Raisins & Peanuts – w/ M&Ms). The protein and healthy fat in the peanuts is a great source of energy combined with the fiber and iron of the raisins. The M&Ms are just a nice tasty treat! I will also devour a juicy orange, spread peanut-butter on apple slices, or have a granola bar on the run.

But the most consistent (and I think most beneficial) snack that I usually enjoy mid-morning is a bowl of oatmeal with a handful of blueberries.  Granted, this is usually instant oatmeal, and frozen blueberries! However, the protein and fiber of the oats combined with a VERY daily dose of antioxidants from the blueberries is something I am firmly committed to.

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