Why 37 is Just a Number: Thriving with Cystic Fibrosis

Editor’s Note: We continue our recognition of Cystic Fibrosis Awareness Month by connecting two people with cystic fibrosis – one who is under the usual life expectancy age and another who has surpassed it by 25 years – to provide a reflection into their pasts and a look into their futures.

On May 10th, 2017, Caleb Remington, a 26-year-old with cystic fibrosis (CF), connected via videoconference to a 62-year-old gentleman, Peter Vrabel, who has the same genetic condition. CF is a rare genetic condition that causes a thick buildup of mucus in the lungs, and affects the pancreas as well as other organs. Individuals living in the U.S. with Cystic Fibrosis currently have an average life expectancy of thirty-seven.1 

Managing CF symptoms can be difficult, and requires regular treatments and therapies. In addition to discussing their daily struggles, Caleb and Peter quickly bonded over their love for outdoor activities and their belief that a positive mindset might be the secret to living a long and happy life with CF.

Before the interview, Peter mentioned, “We must all move forward with what we have and do the best we can to make the best for ourselves in whatever situation it may be.”

During their interview, the two address tough topics such as death, family and fears, in an effort to normalize these kinds of dialogues amongst those in the disease community and to spread hope to those who can relate. When asked about his feelings about death, Peter said, “I am not afraid of it. I know it is there, but I don’t embrace it. Don’t plan for the years that aren’t there, plan for what you’ve got.” 

Caleb, who is newly engaged, discusses his concern about the ability to start a family, as 97-98% percent of men with CF are infertile due to a blockage or absence of the vas deferens.2 For a deeper glimpse into his future, Caleb asked Peter to invite his daughter, Alison, and son, David into the conversation so he could gain their perspective on what it is like to have a dad with CF.

“It was always a motivating factor that my dad has cystic fibrosis,” David said. “He works 12 hour days always, sometimes 6 days a week, and doesn’t let that get him down. In 25 years, he has collected over a year of sick days.”

At the end of their session, Caleb and Peter leave us with a reminder that the only limitations we have are the ones we put on ourselves.

Watch their full conversation in the video above, and to learn more about cystic fibrosis, visit the Cystic Fibrosis Foundation’s website by clicking here.

References

  1. National Institutes of Health (NIH). “Fact Sheet: Cystic Fibrosis.” Updated October 2010. Available at https://report.nih.gov/NIHfactsheets/ViewFactSheet.aspx?csid=36. Accessed May 10, 2017.
  2. Cystic Fibrosis Foundation. “Fertility in Men with CF.” Available at https://www.cff.org/Life-With-CF/Transitions/Reproductive-Health-and-Fertility/CF-and-the-Male-Reproductive-System/Fertility-in-Men-With-CF/. Accessed May 10, 2017.

 


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Tiffany Au

Tiffany Au

Tiffany was born and raised in the suburbs of Chicago, Illinois. She is a University of Illinois graduate with extensive experience in the nonprofit and marketing sector. Traveling both locally and globally while serving various causes, she’s passionate about empowering individuals through shifts of mindset and tangible action. She joined Ambry in 2015 as the Outreach Coordinator. Her focus is expanding patient resources and education, as well as, curating new programs for employee volunteerism. Her personal life is touched by cystic fibrosis, in which, has helped her curate a deeper understanding and empathy for the community Ambry serves. Outside the life of advocacy, she loves to hike, cook, spend time with close ones, cultural experiences, and baby giggles.

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