When it comes to disease “awareness” days, weeks, and months, 2019 is crammed with hundreds of them.
May leads the calendar with 37 such designations, calling attention to everything from stuttering and scleroderma to high blood pressure, lupus and skin cancer.
Cystic Fibrosis Awareness Month also occurs in May. It’s observed nationwide with bike rides, walkathons, and other fundraising events organized by nonprofits like the Maryland-based Cystic Fibrosis Foundation (CFF).
Drucy Borowitz, MD, the charity’s senior vice-president of community partnerships, said people with cystic fibrosis (CF) generally make extra efforts in May to help others learn about the disease, share personal stories, and unite behind the common goal of finding a cure.
“CF impacts all aspects of a person’s life — physical, emotional, social and financial — and every individual’s journey with the disease is unique,” Borowitz told Cystic Fibrosis News Today in an email. “CF Awareness Month is an important opportunity for people within the CF community to shine a light on their success, as well as the challenges they face every day in living fully with this disease.”
Thanks to recent progress in research and care, the life expectancy for CF patients has risen significantly. In fact, a baby born with CF today can now expect to live a median of 44 years, according to the latest CFF data. At the moment, she said, roughly 65 percent of the estimated 30,000 Americans with CF have an approved therapy for the genetic cause of their disease.
“One thing that’s hard for many people with CF is they often look healthy, but must spend hours each day on treatments. Sometimes happily anticipated plans have to be set aside when symptoms worsen,” Borowitz said. “My hope is that each year, more and more people gain an understanding of what people with CF experience and learn that — while this disease can be extremely difficult to live with — people with CF are not defined by their illness.”
Love to Breathe
Somer Love, 40, has made it her mission to spread the word. In 2001, the Utah resident and CF activist launched a website called “Love to Breathe” — a play on her last name.
Despite her disease, which has left her with only 27% of normal lung function, Love devotes an incredible amount of energy to the site, which contains a blog with nearly 700 entries, a compendium of facts about CF, and dozens of photos, videos, and original paintings.
There’s also a page dedicated to the CF activist’s #LoveToBreathe tokens; she’s sent out more than 10,000 of these little medallions to CF patients and supporters in all 50 U.S. states and more than 70 countries.
“Although I’m very aware of CF and how it affects my body, and the fact that it takes the lives of so many children and young adults way too soon, so many people are still unaware,” Love said of CF Awareness Month. “So if focusing on the harsh realities of CF for one month will in some way get us closer to finding that sought-after cure, then it’s all worth it.”
Bike to Breathe
Jerry Cahill of Brooklyn, New York, is raising awareness in a different way.
The 62-year-old, who had a double lung transplant seven years ago, has organized a number of “Bike to Breathe” annual events. He covers 500 miles in one week on his bicycle along routes that take him through multiple states.
Now, Cahill has an even more ambitious goal: twice-a-month “Century Rides” — in which he rides at least 100 miles through a different state. Starting with his native New York nearly a year ago, he pedaled from Brooklyn to Montauk, on the eastern tip of Long Island.
Cahill then went on to ride a minimum 100 miles in Massachusetts, Kansas, Missouri and, most recently, Arizona. The trips, which take about eight hours each, are not races, and Cahill schedules them in between speaking engagements and other commitments.
The long-distance bicyclist doesn’t plan to stop until he’s done all 50 states.
“It’s just determination and willpower,” said Cahill, who’s also a volunteer with the nonprofit Boomer Esiason Foundation. “It’s really important to have a positive mental attitude and live as normal a life as possible. CF is just a bump in the road. My parents used to tell me, ‘Jerry, you cannot fail.’ So I try to bring that out in people.”
Yet another CF patient leading the way is Xan Nowakowski, PhD, an assistant professor of geriatrics at Florida State University’s College of Medicine in Orlando.
“For me as a patient, CF Awareness Month is about opportunities to share my story and other stories from the CF community that showcase the diversity of our experiences and needs in healthcare and beyond,” Nowakowski told CF News Today in an email.
“It is about using my voice to point out opportunities where my care could have been better, as well as successes I have experienced and what could be learned from those,” Nowakowski added.
Nowakowski, 35, is originally from Jackson, Miss., and grew up in central New Jersey before relocating to Florida.
“I have often found great value in sharing within and beyond the CF community about my experiences as an openly queer and gender nonbinary person living with CF — and as a survivor of intimate partner violence,” said the professor.
As a clinical educator, Nowakowski hopes to show “younger people with CF who wish to pursue health sciences careers themselves that these careers are absolutely accessible.”