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4 weeks ago | 
cysticfibrosisnewstoday.com | Lara Govendo |Margarida Maia |Kristin Entler |Brad Dell
I’m so tired of some people’s responses to my suffering. I understand that some people might not get what I’m going through if they don’t have personal experience living with chronic illness. But I’d think they wouldn’t voice an opinion on something they know nothing about. Unfortunately, that’s not the case. People have said things to me that are hurtful and frustrating.
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1 month ago | 
cysticfibrosisnewstoday.com | Brad Dell |Lara Govendo |William Ryan |Jennifer Bleecher
As a child I was a kicker, the type no nurse wants to be near when wielding needles and throat swabs. Eventually I’d relax my shrieking when Mom or Dad held my hand and called me brave. The nurses were then more warmly received. To be safe, they came bearing diplomatic lollipops, stickers, and another “You’re so brave.”There comes a time when the chronically ill child learns that such rewards are designed to shut them up and soften the next meltdown.
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Jan 13, 2025 | 
cysticfibrosisnewstoday.com | Jennifer Bleecher |Steve Bryson |Jennifer Chamberlain |Brad Dell
This month, my beautiful daughter, Claudia, will celebrate her 29th birthday. I was 24 and living with cystic fibrosis (CF) when I became her mother. It’s now been four years since my double-lung transplant, and I’m currently fighting COVID-19 for the fourth time in four years. As the new year begins, I find myself ruminating about the miracle of Claudia turning 29. When I was born in 1971, my mother was told my life expectancy was about 12 years.
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Nov 18, 2024 | 
cysticfibrosisnewstoday.com | Jennifer Bleecher |Lara Govendo |Brad Dell |Bailey Anne Vincent
They say that the older you get, the faster time passes. At 53 years old, I completely agree. As I look back at the columns I’ve written in the past, I can’t believe we’re approaching the holiday season again. Don’t get me wrong — I’m thankful for it. I’m also extremely thankful for my current stable health so that I can enjoy another holiday season. I’m thankful that my family is healthy and that we have the good fortune to easily gather to share a meal and our time.
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Oct 17, 2024 | 
cysticfibrosisnewstoday.com | Steve Bryson |Brad Dell |Lindsey Shapiro |Patricia Inacio
Chronic infection with the hepatitis E virus (HEV) may be linked to pig-derived pancreatic enzyme replacement therapy (PERT) in people with cystic fibrosis (CF) who underwent lung transplants, a study found. CF patients in general had disproportionately higher rates of antibodies against HEV, regardless of transplant status, and chronic HEV infection was found solely in CF transplant recipients.
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Aug 13, 2024 | 
cysticfibrosisnewstoday.com | Jennifer Chamberlain |Marta Costa Figueiredo |Brad Dell |Steve Bryson
Most days when I start my computer, I barely glance at my home page before shutting it down. But the other day, an article title about a “glass child” caught my eye. Something was telling me to read the article. Upon reading, I learned that the term “glass child,” quite aptly, refers to a sibling of a chronically ill or disabled individual. Studies are finding that siblings of disabled children often feel invisible, lost in the shadow of their sibling’s disability.
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Aug 13, 2024 | 
cysticfibrosisnewstoday.com | Brad Dell |Lindsey Shapiro |Steve Bryson |Jennifer Bleecher
I’ve been trying to write more. I promise. But my tacrolimus dose is pretty up there, and it’s getting on my nerves. Literally. Nerve pain from the medication, an immunosuppressant used in lung transplant management, has me feeling like I’m driving diabetes lancets into my fingers with every touch of a key. That tall dose also comes with something called “tacro brain” — a mushy mind. Ideas do come, but usually by the time I open my Notes app, they go.
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Aug 13, 2024 | 
cysticfibrosisnewstoday.com | Lindsey Shapiro |Brad Dell |Patricia Inacio |Steve Bryson
Families in the U.S. living with cystic fibrosis (CF) who’ve been affected by food insecurity feel that financial constraints imposed by the disease contribute to the problem and that government support programs are insufficient, interviews with patients and caregivers suggest. Those interviewed report feeling stigma and embarrassment about the issue, and called for better screening and intervention programs at CF care centers to help those in need.
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Mar 7, 2024 | 
cysticfibrosisnewstoday.com | Mary Chapman |Brad Dell |Jennifer Chamberlain |Marisa Wexler
A New York State assistance program re-launched last year to provide financial aid to adults with cystic fibrosis (CF) for medical costs has a new administrator. The HealthWell Foundation‘s subsidiary HWF Direct has been tapped to administer the state’s Adult Cystic Fibrosis Assistance Program, known as ACFAP. The program reimburses eligible patients for CF-related care and services — such as prescription drug and device costs, and medical and behavioral health services.
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Feb 8, 2024 | 
cysticfibrosisnewstoday.com | William Ryan |Brad Dell |Marisa Wexler |Patricia Inacio
I sat at the head of the table in my workplace conference room and looked out the window, trying to grasp what I needed to do during my break. The problem was, I couldn’t remember. Instead, I just kept looking out the window as Pixies’ “Where Is My Mind?” played in my head. Unlike the final scene of “Fight Club,” the only thing collapsing around me was my memory. My medications were affecting me in ways I couldn’t control. Side effects can be hell for anyone.
