During CF Awareness Month, Emily’s Entourage invites members of the cystic fibrosis (CF) community to share their stories. Today’s blog post is by Emily Wasserman, a sibling of an adult with CF.
My sister Natalie and I are a year and a day apart. We were almost born on the same day, but my mother wanted us to have separate birthdays, so she delayed her delivery for 24 hours. Since I was only a year old when Natalie was born, it took me several years to realize that even though we were sisters and best friends, we were different.
I remember my mom opening a “panc,” or pancreatic enzyme supplements, and sprinkling them on my sister’s applesauce during lunch. I didn’t understand what they were, so I was jealous. I wanted sprinkles on my food, too.
Then, there was the time Natalie had to go to the hospital. I remember going with my grandparents to visit her. She had balloons and gifts in her room, and lots of storybooks. It seemed like a great party, but I knew it couldn’t be because she was in a hospital gown and there were big, scary machines in the room, and she couldn’t come home.
By the time we were a little older, I understood that Natalie had cystic fibrosis (CF). Our games were interrupted when she had chest physical therapy sessions, or “chest PT,” as we called it. I watched as a woman with strong hands carefully turned Natalie over and pounded her back with cupped palms to help break up the mucus building up in her lungs. Other times, Natalie would do breathing treatments with machines that puffed and wheezed and released chemicals into the air like clouds.
Every year, I watched my sister’s health deteriorate more and more. No matter how many treatments she did, or how much time she spent with a therapy vest, which later replaced manual chest PT, or exercising, it was never enough. The truth is, she is fighting an impossible battle.
Even though in 2012, the FDA approved a lifesaving drug for CF, it does not help people like Natalie who have a rare nonsense mutation of CF. My sister is part of the outlying 10% of individuals with CF who still do not benefit from lifesaving therapies.
I don’t think people realize that CF not only ravages the body; it also can destroy the mind and spirit. Hope is essential to living, but how can you tell a person in the final 10% of the CF population to have hope when the evidence and odds are against them? Every day, I wonder how my sister lives with this harsh reality. Her resilience is a testimony to the strength of the human spirit. However, no one should have to fight this mental and spiritual battle.
On the most basic level, I want to cross out CF to save my sister. I want funding for research to develop therapies that will extend her life. Selfishly, I want more time with Natalie. As I’ve seen over the years, especially after her double lung transplant in 2021, time is so precious.
However, my desire to cross out CF runs deeper. I do not believe it is morally or ethically acceptable for only part of the CF population to have a chance at life.
Everyone with CF deserves access to lifesaving therapies that can extend their time with friends and family and allow them to build meaningful, fulfilling lives.
The way I can fulfill my duty to my sister, and to the CF population at large, is to use my voice to extend a call to action to the general population. Educate yourselves. Read stories like the one I’ve written to learn more about the people behind the disease. Advocate for government research for lifesaving therapies for the outlying 10% with rare CF mutations. Together, we can cross out CF.