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Cystic Fibrosis Advocate Shares the Invisible Burden of Living with CF on YourUpdateTV
During Cystic Fibrosis Awareness Month, Rebecca Duckworth Opens Up About the Daily Realities of Managing a Rare, Genetic Disease and Why the Fight for a Cure Is Not Over
NEW YORK, May 18, 2026 (GLOBE NEWSWIRE) -- Cystic fibrosis is a rare, genetic disease that affects the lungs, pancreas, and other vital organs, requiring lifelong specialized care for the approximately 40,000 people living with it in the United States and more than 105,000 diagnosed globally. Recently, CF advocate Rebecca Duckworth conducted a satellite media tour in partnership with the Cystic Fibrosis Foundation and D S Simon Media to share her personal story, shed light on the invisible burden of managing CF every day, and raise awareness during Cystic Fibrosis Awareness Month.
No two people with cystic fibrosis have the same experience with the disease. Their symptoms, daily care, and quality of life all differ and evolve over time. Most people don’t realize everything it takes to stay healthy while living with a chronic illness like CF. Rebecca Duckworth, an adult living with CF and an advocate for the rare disease, shares her own personal experiences to help raise awareness of the invisible burden of CF:
What is cystic fibrosis and how does it impact those living with it?
Cystic fibrosis is a rare, genetic, progressive disease that people are born with, and it can affect people of all backgrounds. As Duckworth explains, CF causes thick, sticky mucus in the body that clogs and causes issues in several organ systems including the lungs, digestive system, and liver. There are about 40,000 people living with CF in the United States and over 105,000 diagnosed globally. Every person's experience with CF can look different — some people are able to take a treatment that has dramatically improved their health, while others who have certain CF-causing mutations are still waiting for a transformative therapy that works for them.
What does a typical day look like when living with CF?
Each person living with CF can have a different experience with the disease. For Duckworth, managing CF is practically a full-time job. "We have 90 minutes a day of treatments to do," she said, describing a daily regimen that includes wearing a vest that shakes to loosen mucus in the lungs, inhaling nebulized medications to open airways and thin mucus, and taking enzyme pills before every meal to aid digestion. Beyond the physical treatments, there is a constant mental load that often goes unseen. "I have to call the pharmacy to manage the medication delivery, speak with the care team about getting a refill. There's a lot that goes on just for the management of it." she explained. Regular check-ins at a CF clinic every three months, hospital stays for infections, and even intravenous antibiotics can all become part of life with this disease.
What are the things people often don't see when it comes to managing a chronic illness like CF?
One of the most striking aspects of living with cystic fibrosis is that it is largely invisible to the outside world. As Duckworth points out, someone with CF can look completely healthy and normal on the surface, giving no indication of the intensive daily regimen happening behind the scenes. "It becomes a part-time or full-time job sometimes just to sanitize the nebulizers, manage the medications, get the delivery scheduled," Duckworth said. Hospital stays for flare-ups and infections can interrupt daily routines without warning, and the nonstop mental load of staying on top of it all to coordinate necessary care adds an emotional toll that rarely gets discussed.
What progress has been made in CF treatment, and why do we still need a cure?
During her lifetime, Duckworth has had a front-row seat to remarkable breakthroughs. When it was first discovered, CF was a childhood disease, and when Duckworth was born, her parents were told she might only live to age 18. Today, thanks to advances in research and care, most people with CF are adults. Just a few years ago, a new class of medications called modulators became available. Taken in pill form, they can help correct the defective protein in the body that causes CF. "It makes the salt chloride channel more open and allows the mucus to become less sticky and thick," she explained. But not every mutation is eligible for these modulators, and even for those who benefit, the fight is far from over. "If I get an infection, I'm still going on IV antibiotics," Duckworth noted. There is still no cure, which is why continued awareness, support, and research remain critical. The Cystic Fibrosis Foundation's mission is to find a cure for this disease and help all people with CF lead long, fulfilling lives.
How can people learn more about CF and get involved with the Cystic Fibrosis Foundation?
For anyone looking to learn more about cystic fibrosis, understand the disease, or get involved in the fight for a cure, the Cystic Fibrosis Foundation is the place to go. The Foundation funds research and drug development advances high-quality care, and partners with the CF community. There are chapters across the country where people can volunteer, connect with the CF community, and support efforts to find a cure. Visit cff.org/CFmonth for more information.
About Rebecca Duckworth
Rebecca Duckworth is an adult living with cystic fibrosis and an advocate who is raising awareness for this rare, genetic disease. A professional performer, Rebecca is also the cofounder (along with her spouse Bobby) of the DistrActors, a nonprofit organization made up of comedic actors who create personalized music, storytelling, and skits to provide entertainment and emotional support for children during hospital visits.
About the Cystic Fibrosis Foundation
The Cystic Fibrosis Foundation is a leading health care nonprofit and driving force in the search for a cure for cystic fibrosis. For more than 70 years, the Foundation has pioneered new approaches to treating this rare genetic disease and supporting people living with it. Guided by a multi-year strategy and deep partnership with the CF community, the organization is focused on meeting today’s urgent challenges and advancing tomorrow’s scientific breakthroughs. Nearly every CF therapy available today was made possible with its support. The Foundation supports a national network of accredited CF care centers, and its impact is made possible by the work of local chapters across the country. Learn more about the Foundation at cff.org.
About D S Simon Media:
The firm is well known as a leader in the satellite media tour industry and produces tours from its studio and multiple control rooms at its New York headquarters. Clients include top brands in healthcare, technology, travel, financial services, consumer goods, entertainment, retail and non-profits. Established in 1986 the firm has won more than 100 industry awards.
About YourUpdateTV: YourUpdateTV is a property of D S Simon Media. The video included and release was part of a media tour that was produced by D S Simon Media on behalf of The Cystic Fibrosis Foundation.
Media Contact:
Michael O’Donnell
D S Simon Media
212-736-2727
modonnell@dssimon.com
A video accompanying this release is available at https://www.globenewswire.com/NewsRoom/AttachmentNg/d8d83418-553d-4d09-b913-90626d027c19
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