Portland Books Editor-in-Chief Whitney Smyth calls the remarkable story of a family wrestling with cystic fibrosis, “a book that manages to be many things: a heartfelt biography … a Continue reading “There Are No Alligators in Heaven!” Scores 4-star Review from Portland Books
CF Podcast 164: CF Spartan, Honoring the Loss of My Brother feat. Chris Love
In this podcast, we meet 26-year-old CFer, Chris Love, who is a videographer, guitarist, and avid Spartan racer living in New Jersey. Diagnosed at birth, Chris always looked up to his brother and best friend, Patrick. From the time they were Continue reading Jerry Cahill’s CF Podcast 164
I Want Us to Stop Using the ‘Life Expectancy’ Statistic
Cystic fibrosis life expectancy gets tossed around like any number of statistics in the medical world. It’s something that people love to talk about, or use to show success and progress. Continue reading The ‘Life Expectancy’ Statistic — By Gunnar Esiason
Published in Cystic Fibrosis News Today on September 15, 2015
By Reid D’Amico
“Brennen Reeves just wanted to be normal. The only problem: the fatal lung disease, cystic fibrosis. The only solution: a double lung transplant. Hilarious Continue reading Searching for Normal: “Breathe. A True Story” Theatrical Autobiography Chronicles CF Struggles, Inspiration
Please check out the link to The Huffington Post to read published writer Elizabeth Scarboro’s experience with a a great CF Doctor. Some of us might take it for granted that this is everyone’s experience with doctors but it is just not so.
I met Dr. Stulbarg when I was 22, and had just moved to San Francisco to be with my boyfriend Stephen. Stephen had cystic fibrosis, but he’d been unusually healthy as long as I’d known him. Then, three weeks after my arrival, on a Saturday night, his lung Continue reading Anatomy of an Excellent Doctor, By Elizabeth Scarboro
As a 56 year-old CFer, I am glad I have saved my money as if I had no disease. That was not always the case. Continue reading CF and Finances
This blog was written by a woman who dated and then married a young man who had CF. She has written about this in The Modern Love column in the NY Times as well as just had a memoir published about her life with this man. It is so moving and well-written, I highly recommend at least reading her blog and then possibly purchasing her memoir titled, My Foreign Cities. This might not only interest those whose lives have been touched by those around them who have CF but those with CF as well.
The Ways I’ve Worried By Elizabeth Scarboro
Recently, I found myself lying in bed, trying to sleep, a common occurrence. I had forgotten to call my mom back earlier, and I now pictured her standing in her kitchen. Then the next second she had aged 20 years in my mind, she needed help and I worried about where she and my dad would live, since my husband, kids and I are already packed in a 740-square-foot house. (To read the whole article, click on link.) http://opinionator.blogs.nytimes.com/2013/04/01/the-ways-ive-worried/
Usually, when a friend of mine dies from CF and its complications, I am sad but am not shocked. Nor does it take me long to accept this. Same goes for losing a friend to complications post-lung transplant. But there are exceptions. And they are never easy. Continue reading Losing a good friend to the good fight.
A book of original poems, quotes, anecdotes and stories penned by those living with Cystic Fibrosis, those who have succumbed to the disease, and those who share and have shared their lives with those who have Cystic Fibrosis. We are accepting original written work to be included in this book. Continue reading An Open Invitation For Submissions Of Original Written Works