My Journey with Cystic Fibrosis: Overcoming Obstacles and Embracing Self-Care – by Zain Arif
Life-Changing News Hello there! I’m Zain Arif, a 19-year-old who’s been living with Cystic Fibrosis (CF) since I was just a baby. Being diagnosed with CF wasn’t easy, especially in a country where the disease wasn’t commonly known. But thanks to a determined doctor who recognized the symptoms, I was …
Parenting with Cystic Fibrosis – by Megan Mancuso
Deciding to Get Pregnant The choice to have children is filled with uncertainty. What if my baby is born with higher needs than usual? What if I lose my income? How can I promise to provide for this child until adulthood when the future is so uncertain? Cystic fibrosis adds …
Life is Good! – by Kevin Munroe, 65 years young
*Note from the editor: Meet Kevin, a 65-year old “Grampy” with Cystic Fibrosis! My first thought was: I bet he has some interesting stories to tell! Well, for his article Kevin submitted a delightful collection of interactions and hilarious anecdotes from his life. Hope you enjoy reading them as much …
Leaving a Legacy That Lasts – by Jessica McDearman
As a young child, I dreamed of one day having a little girl to call my own. I practiced swaddling and rocking my favorite stuffed animals all the while carrying her name tucked away in a secret place in my heart. Many years later, even as I found myself deep …
All in God’s timing – by Ashton Barton
Hello, my name is Ashton Barton. I’m 35 years old, wife to a good Godly man, and a mom to not 1, 2, 3, or 4 but 5 beautiful babies. My husband and I got married on October 9, 2010, which I was 22 years old at the time, and …
Living For Longevity – by Ashley Wilson
“If you have the aspiration of kicking ass when you’re 85, you can’t afford to be average when you’re 50.” -Peter Attia As CFers are living longer, fuller lives this sentiment from Peter Attia rings true. Many CFers are capable of living to “old age” but it doesn’t just come …
Emotional Regulation & Resilience Living with CF – By Tina Clarke
Emotional regulation is defined as being able to “control” our emotions so that they stay within a manageable range of intensity for us. But what does it mean if we don’t feel in control and our emotions seem to feel too much? When living with CF it is pretty common …
Long COVID Breathlessness
– By Aoife Rafter I was doing so well, isolating and laying low the past 2 years when COVID cases spiked in my local area. I was the only one out of my family and friend who hadn’t contracted the virus, despite being a close contact 3 times! But then …
Why I Don’t Remember or Celebrate the Date of my Double Lung Transplant
– By Tina Clarke Most people with CF who have received a double lung transplant know the date nearly as well as they know their birthday and they celebrate it with cake, balloons or gathering with loved ones. My strange truth is that I don’t even remember the date of …
Two sides of the (CF) coin
Two sides of the (CF) coin – By Alison Smith Living with CF, for me there are almost 2 different worlds, before kaftrio and after kaftrio. Before I was on this new drug my whole life has revolved primarily around my health, hospital life and medication, and the ripple effects from …