Five years after surpassing the 40-year life expectancy for Americans with cystic fibrosis, Sandy Springs resident Andy Lipman is celebrating the release this week of his book about survivors of the debilitating disease.
Cystic fibrosis is a progressive genetic disease that damages the lungs and digestive system and makes breathing difficult. In the United States, one in 29 Caucasian Americans carry the CF gene.
More than 30,000 people are living with the disease in the U.S. and about 1,000 new cases are diagnosed each year, according to the Cystic Fibrosis Foundation. Lipman says it’s one of the diseases tested as part of Jewish gene screens because it’s also common in the Jewish community.
The release of “The CF Warrior Project: 65 Stories of Triumph against Cystic Fibrosis” coincides with May’s Cystic Fibrosis Awareness Month.
The number of warriors included in the book comes from how young children often pronounce the name of their disease: “65 roses.” The spotlighted CF survivors include a woman who scaled Mount Everest, became a circus acrobat and secured approval for breakthrough CF drugs in her country, Ireland.
As a “warrior” himself, Lipman is running his 23rd Peachtree Road Race this summer, having been a torchbearer for the 2002 Olympics. The father of two healthy children also helped raise more than $4 million for the Cystic Fibrosis Foundation in memory of his sister, who died from the disease when she was 16 days old.
“I tell people no one can imagine what it’s like to go into space without a space suit,” trying to describe the feeling of breathing difficulties. “It’s like somebody trying to breathe through a coffee stirrer.”
Lipman, an Atlanta native, takes 40 to 50 pills daily, mostly enzymes to digest foods. He also does therapy treatments three times a day to help with breathing. Running about three miles a day also helps him clear his lungs.
For his book, Lipman said he interviewed 500 people from around the world. He communicated electronically because people with CF are supposed to be more than six feet apart to lower the risk of cross-infection. While he chose to highlight 65 people for this book, he plans to write another one to include more of those he interviewed.
Lipman said he was inspired to write about CF because of a lack of role models as a child, when he learned that he would not live to see his 25th birthday. He wrote his first book at 25.
“Now in my mid-40s, I thought a book about people living longer with cystic fibrosis was necessary and long overdue,” said the 45-year-old author. “I’m not just talking about people who are living their lives, but people who are also accomplishing amazing things while doing so.”
The book includes endorsements from celebrities such as singer Celine Dion, on the cover stating “CF warriors have two things in common. We all have cystic fibrosis … but cystic fibrosis will never have us!”
Among the other celebs providing endorsements are “Transformers” actress Megan Fox, “American Ninja Warrior” winner Isaac Caldiero and Atlanta Braves baseball icon Chipper Jones.
This is Lipman’s fourth book. He has written two memoirs about his battle against the long odds of a CF diagnosis. He also wrote “A Superhero Needs No Cape,” about a young person who grows up to play Major League Baseball while fighting the disease. Jones, an MLB Hall of Famer, wasn’t Lipman’s model for the novel. But Jones’ endorsement indicates he has been involved with the CFF for more than 20 years, “and the resiliency of each person I have met who is battling this disease amazes and humbles me.”
Lipman’s inspiration for his CF work is his 95-year-old grandmother, a Holocaust survivor. “My grandmother was so strong through surgeries and the Holocaust and she makes me want to be a better Jew and a better fighter.”
You can find more information about Lipman, his book and the disease at www.CFWarriorProject.org.