During CF Awareness Month, Emily’s Entourage invites members of the cystic fibrosis (CF) community to share their stories. Today’s blog post highlights the story of Tré LaRosa, an adult with CF. 

My approach to patient advocacy has changed over the years. As a kid, “patient advocacy” was in the clinic and in school, where I advocated for what I needed as somebody with a chronic disease. In recent years that has changed to more formal advocacy, including in my roles on the Adult Advisory Council (AAC) and Therapeutic Development Network (TDN) Clinical Research Executive Committee (CREC). I also speak at cystic fibrosis (CF) center family education days where I try to make it clear that parents, caregivers, and healthcare practitioners have a responsibility to treat people with CF, regardless of age, with respect, dignity, and intellectual integrity. 

I express this because I firmly believe that even from a very young age, we absorb more information from the world around us than we can necessarily articulate. In other words, children with CF understand their lives are different before they ever learn the words “cystic fibrosis.” This “different” life is one where health — and sometimes sickness — is at the forefront, an experience that is not necessarily the norm for every child or adult. This life teaches us, against our will, some very fundamental, hard truths of what it means to be a human. We learn that life is not really fair, or at least that life is different for all of us. We learn that we will need to be brave and that resiliency is deeply embedded in us. We learn all of this before we ever realize we’re learning anything at all.

As I reflect on my life, I think of it a bit like the blanket my Nanna knitted for me: individual threads woven together into a canvas, CF one of those threads woven throughout the rest of my life. My circumstance is not unique; as a genetic disease, CF can be generational and familial. In my case, the story of the LaRosas and CF began before my sister and I were even born, a fate assigned to us due to the randomness of natural selection, genetics, and recessive inheritance. My dad lost his sister to CF in 1978 when he was 18 years old. She was only 12. It was a cruel fate — one that no 12-year-old deserves. No one could’ve expected that 40 years later, his son would also one day share the heartbreaking experience of losing his sister. My grandfather lost his daughter; my dad lost his sister and his daughter; now I, the third in the lineage, have also lost my sister.

My sister died when she was 29 years old, six months before her 30th birthday. She wanted to marry and have children. She did not get to experience that. She received two bilateral lung transplants, and developed bronchiolitis obliterans syndrome — typically known as “chronic rejection” — both times both times, the second time confining her to her fate. All told, she underwent dozens of surgeries,  spent a third of her life in hospital rooms and doctor’s offices,  and saw stability for only short stints.

Still, she approached every challenge with resiliency and bravery, traits that exist not in the absence of fear, but despite its presence.

A year and a half after she died, a CFTR modulator therapy was approved for those that shared the most common CF genetic mutation. She wouldn’t have been eligible, or at least wouldn’t have been able to glean as much benefit from it since she had already received a lung transplant.

I began taking the medication, and within a year, I experienced what many of us have been deeply fortunate to experience, a reversal of fortune that has provided me with stability I never even dreamt of before.

This stability has remained. I feel fortunate and grateful, and I feel sad. I feel sad that my sister never had the chance to experience this life. I wonder what her life would’ve looked like, I grieve the future she deserved, the amazing mother she would’ve been, and the career and life she could’ve had if it hadn’t been stolen by this devastating disease.

This is the story of cystic fibrosis, a genetic condition, an unthinking, random, indiscriminate disease that has caused indescribable and incalculable human suffering. This is the story of Tré and Alyssa LaRosa, of Renée LaRosa, of our family and our friends, and the over 100,000 human beings across the world with CF and their loved ones. It is a story filled with human beings who, despite lives filled with much pain and suffering, have loved, imagined, dreamed, fought for, and hoped for a better world for ourselves and our shared community.

With the continued advancement of science and medicine, we have started to see what life without CF can look like for some. This is the future my sister deserved. This is the future we all deserve.

Author

Tré LaRosa is a scientific project manager, writer, patient advocate, and 30-year-old adult with cystic fibrosis living in the DC area. He has served on various CF-related committees, including the National Outreach Council, Adult Advisory Council, and Therapeutic Development Network Clinical Research Executive Committee. He enjoys spending time with his family, his girlfriend Jessica and their two dogs, Duncan and Leo.