LIVING WITH CYSTIC FIBROSIS…ONE BREATH AT A TIME

04/05/2018

LIVING WITH CYSTIC FIBROSIS…ONE BREATH AT A TIME

As a young NFL quarterback, Boomer Esiason became involved in the cystic fibrosis cause.  He had been at a banquet and heard a grieving father talk about the disease and was moved.  

In 1991, not long after Boomer had attended that banquet, his wife Cheryl gave birth to the couple’s son Gunnar.  As fate would have it, Gunnar was diagnosed with cystic fibrosis.

For someone making a living trying to avoid being knocked on your back by savage defenders every Sunday -- and having to get back up quickly – this news knocked Esiason down harder and hurt a lot more.  It had crossed his mind to quit football altogether and dedicate more time to his son and to fighting the disease.  Thankfully, he realized he could use Super Star status to help Gunnar and the thousands of others afflicted by the disease.

The Numbers.

About 30,000 people in the United States are affected with by cystic fibrosis (CF), and about 1,000 babies are diagnosed with it each year. It occurs mainly in Caucasians, who have a northern European heredity, although it does occur in African-Americans, Asian Americans, and Native Americans.

CF causes the body to produce unusually thick, sticky mucus that clogs the lungs and obstructs the pancreas and stops enzymes from helping the body break down and absorb food. Patients are prone to infections and progressively lose the ability to breathe.

Approximately one in 31 people in the US are carriers of the cystic fibrosis gene.  Fortunately, the disease does not affect these people and most of those in this group don’t know they are carriers of the gene.

One Breath At A Time

According to a 2008 study, the median survival age for someone with cystic fibrosis has gone up from six months in 1959 to a median age of 37.8 in 2008.   While this is remarkable, it’s not enough for those afflicted with the disease.  They don’t want to face a time clock.  They want a cure.

The First Step

In 1993, Esiason launched the Boomer Esiason Foundation.  Knowing he was in for a battle, Boomer realized he couldn’t fight this one alone.   He needed to “pick a team” and he needed each member to be as passionate and dedicated to the cause as a man with a son fighting to breathe another day.  His “first round” pick was his former center with the Bengals, Dave Rimington, who was working for an import-export business in Hong Kong.

Esiason simply told Rimington, "I could use a hand, buddy." Rimington returned to the states and helped launch the foundation.   Football had now taken a back seat to Esiason’s new goal: being outlived by his son.

According to the foundation, the organization is a “dynamic partnership of leaders in the medical and business communities joining with a committed core of volunteers to heighten awareness, education and quality of life for those affected by CF, while providing financial support to research aimed at finding a cure. Since its inception, the Boomer Esiason Foundation has raised more than $100 million to support research toward a cure for CF, as well as programs directly benefiting the CF community”.

Esiason continues to attack the disease head-on and helps bring CF to the forefront of policy discussions throughout the country. He has traveled to Capitol Hill on multiple occasions and to various states to speak on behalf of the CF community.

The Accidental Poster Child for Cystic Fibrosis

In 1993, Boomer Esiason and son Gunnar graced the cover of Sports Illustrated.  While Boomer merely intended to go public with his crusade to fight CF, the heart stealing photo of a smiling cherub on his dad’s shoulder’s made Gunnar the unofficial poster child for the disease.   Twenty years later, Gunnar has embraced that role with the style and a matter of fact attitude.

“I guess I am the unofficial poster child for the disease and I don’t mind,” he says.  “I enjoy helping people understand the disease and help them get the most out of life. I find that too often people are scared to share the disease and sometimes they use it as a crutch.  That’s unfortunate.  I try to be as normal as possible and show others you can live with the disease and succeed in life.  Don’t let the disease take control of your life.”

Part of living with the disease sometimes means educating others who aren’t affected about what it means to live with CF. An English major in his senior year, he plans to take a year off to work for the foundation, doing some public speaking and educating others about the disease.  Then he plans to head back to college for a law degree.

When Gunnar decided he wanted to leave home for college, his mother Cheryl wasn’t happy.  Living with CF means a clean environment and the typical college dorm is far from the good housekeeping seal of approval.  Consider that with the lifestyle of a typical male college student and it was a recipe for disaster.  It took some convincing.

Going away to college was a big step for Gunnar as well.  His choices were limited to a college that had to be located close to medical facilities experienced in dealing with CF. He chose Boston college because of Boston Children’s Hospital and the Dana Farber Hosptial being minutes away.  That made his mother a little more comfortable, but she also liked the idea that he was only a little more than three hour drive from home.   Of course, the choice of Boston was easy for Gunnar since it is a huge hockey school, one of his favorite sports.

“I understood my mom’s concerns,” Gunnar noted.  “But I have always known the steps I have to take and the precautions necessary to live as normal as possible with the disease.  And I’m used to educating people about the disease.  I sat down with my roommates and laid out the rules.  We have bottles of hand sanitizer all over our dorm, they all got flu shots, we keep the apartment clean and when one of my roommates get sick, they automatically quarantine themselves.”

Now in his senior year at Boston College, Gunnar’s roommates are used to his daily routines of a nebulizer, vibrating vests and medication.

Gunnar’s outlook on the disease is a reflection of today’s approach to “living with CF”.  In the beginnings, those affected were told to avoid activity.  Modern day medicine says the key to enjoying life with CF, is to be active and strengthen the lungs.  A stronger body can fight harder.

Being active and loving sports has always been a part of his life.  Not because of his father’s legendary status, he has just loved sports.

“In high school I played organized sports – football, lacrosse, and hockey.  Hockey was my favorite,” he points out.  “I try to reassure everyone who is affected by this disease that CF isn’t the end of the world – if you don’t want it to be.  That has been my main goal.”

It may surprise many that Gunnar has been so active athletically.  Given contemporary treatments and the success in the battle against CF, he merely is demonstrating how understanding the disease and knowing your limitations can go a long way.

He knows the signs of being in trouble and calls his doctors.  Knows when to head to a hospital for treatments and he keeps educated on medications and advancements in the fight against CF. Most importantly, he says being compliant with your treatment plan is a necessary part of life.  Being told you or a loved one has a serious disease can be difficult and life changing.   But it doesn’t have to stop your life.

Changing the Outlook

The median age of survival for CF patients has increased to more than 37 years – far more encouraging than the six-month life expectancy in the 50s.  Along with this good news, comes the need to focus on CF patients who are living well into their adult years.  With Gunnar growing into adulthood, the Esiasons have added the focus of bridging the gap between pediatric and adult CF care.   With the life expectancy expanding, the research efforts have to adjust as well.

Part of bridging that gap and addressing this new milestone for the disease, The Boomer Esiason Foundation granted Columbia University Medical Center $6 million to establish the Gunnar Esiason Adult Cystic Fibrosis and Lung Program in 2009.

The Gunnar Esiason Adult Cystic Fibrosis and Lung Program offers a comprehensive approach to diagnosis and treatment of CF in adults, with specific attention to transition of patients from the pediatric to adult health care system. The program pursues innovative clinical and basic research, trains future experts in the care and study of adult CF, and provides patient education and outreach programs.

Another support program the Foundation funds is the Lung Transplant Grant Program that financially assists families with travel, relocation, and rehabilitation costs that are not incurred by insurance companies. Last year, the Foundation provided more than $100,000 to families in transplant grants alone.

In plain terms, Esiason and the Foundation have instituted several educational, awareness and compliance programs aimed at the growing adult CF population.

The “Adult” Version of the Cystic Fibrosis Poster Child 

Meet Jerry Cahill

Jerry Cahill is the senior version of Gunnar Esiason.  He has volunteered at the Foundation since 2004 and he plays an integral role in all Boomer Esiason Foundation efforts in the CF community.

Jerry, 56 years old and living with CF, heads up the Boomer Esiason Foundaton scholarship and transplant grant programs, and he hosts a podcast series and the CF Wind Sprint video series. Under his leadership, the Foundation launched the Exercise For Life Scholarship and Team Boomer-Fighting Cystic Fibrosis athletic program.

Cahill is another example of how being compliant allows you to live life with CF. Prior to joining the foundation, he spent 27 years working in sales and management in the apparel industry until the need for a double lung transplant ended his apparel career, but it didn’t stop him from living.

A lifelong athlete, Cahill competed in the pole vault for the University of Connecticut and NYAC, including a personal of best 16 feet, 10 3/4 inches. He is living, breathing proof that people living with CF can have a fulfilling life.

On April 18, 2012, Jerry received a life-saving double lung transplant and ran in Boomer's CF Run to Breathe only three months later.  Cahill coaches pole vaulting for a New York high school, runs and bikes and hosts a series of podcasts for those with CF.

In the athletic world, it is said: “Those who can, do.  Those who can’t teach”.  Jerry Cahill, much like Gunnar Esiason breaks the mold.  They both do.  They both teach, and they both raise the bar on living with CF. Maybe it would be better said that they eliminate the bar because the individual sets the standards.

In spite of having a double lung transplant, Cahill continues living and teaching.  Gunnar sets his life goals and lives.  Dealing with medications, treatments, etc., to be compliant are just part of life.  As Gunnar says, “you have to get into a routine.  It’s just a part of the day.”

Team Boomer, created by Cahill, encourages people with CF and those who support the CF community to exercise, a proven medical protocol that extends the lives of CF patients. Team Boomer not only encourages exercise but also provides an avenue by which individual athletes can raise money to support the CF community. The program sponsors and participates in numerous athletic events, including Boomer’s Cystic Fibrosis Run to Breathe 10K, which is held in Central Park in New York City.

You Cannot Fail, the newest program at the Foundation, which was also created by Jerry Cahill, is a multi-platform initiative designed to motivate, inspire, and aid those with CF and any others facing seemingly insurmountable difficulties.

Progress.

The Boomer Esiason Foundation is driven.  Driven to find a cure and determined to help those with CF understand you can live with the disease and succeed.  Most importantly, the foundation – from Boomer, to Gunnar to Cahill to every member of the staff -- wants those with CF know they aren’t alone.  Progress is being made.

Advancements are being made, new drugs are being developed and the life expectancy raises everyday.  While the medical community works toward a cure, foundations continue to raise awareness and funding for research and develop education programs.  The Boomer Esiason Foundation takes it one step further – teaching those with the disease how to live – one breath at a time.

You Cannot Fail.

The Boomer Esiason Foundation recently launched the You Cannot Fail campaigna program that supports not only the cystic fibrosis community, but also anyone facing dire illness or circumstances. At some point, every person faces some sort of difficultly – from an unusually difficult day to a life-changing decision to a formidable situation. The You Cannot Fail initiative aims to encourage people to face life’s challenges with dignity and grace and to motivate every person to discover the hero inside.

The You Cannot Fail campaign uses multiple platforms to collect, organize, and share individual’s heroic stories, to accept donations that fund a scholarship, and to spread the motivational message that you cannot fail if you try to be the hero of your own story every day.

You Cannot Fail Scholarship

The You Cannot Fail scholarship, awarded annually on April 18 – the anniversary of Jerry’s double lung transplant, was created to honor exceptional student-athletes who have cystic fibrosis and do not let the disease prevent them from living their lives with purpose, passion, optimism, and courage.

For more information contact the Boomer Esiason Foundation at http://esiason.org.  You Cannot Fail Program:  www.youcannotfail.com

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