Hello! I'm assuming that most of you visiting this page already know me, but for those of you who don't, let me share a little bit of background.
Both my older sisters and I were born with cystic fibrosis. CF is a genetic disease that causes a thick, sticky mucus to buildup in the body's organs, kind of like tar. This mucus clogs the organs and prevents them from working properly which leads to problems like frequent lung infections, pancreatic insufficiency, digestive issues, liver disease, and more. Ultimately, it leads to organ failure and death.
Having cystic fibrosis has meant different things for me at different times in my life.
When I was a child, it meant taking pills and doing treatments for reasons I didn't understand. It sometimes meant hiding those pills in secret places when my mom wasn't looking, because a 5 year old just doesn't want to take that many pills every day. It meant going to CF camp (before the dangers of cross contamination were understoood) where we had the time of our lives swimming, doing crafts, playing games, and meeting other CFers and their siblings. CF also meant saying goodbye to my sister when she was just 14 years old, awaiting a double lung transplant. It meant learning about death and the ugliness of this disease at a very early age.
As a teenager, CF meant an exemption from certain activities in PE because sometimes I just wasn't feeling well enough to participate. It meant yearly hospital stays, which we called "clean outs" where once again we met other CF friends, had Tae Bo parties, and made avocado masks together. CF meant reading the words "genetic and fatal disease" in my biology book, and having to tell my friends that, yes, CF was indeed a terminal condition.
As an adult, CF has meant hours and hours of treatments, countless hospital stays, and dozens of medical procedures. It has meant finding the very best friendships and deepest connections with people in the cystic fibrosis community. But it also meant isolation and not being allowed to hangout with my friends, because people with cystic fibrosis aren't allowed to be within 6 feet of one another due to the dangers of cross contamination (which were now very well understood). It has meant losing some of my best friends in the world without ever having the chance to hug them or tell them goodbye. And it's meant looking into the eyes of my young daughter and giving her the painfully honest truth when she asks, "Mama, can you die from cystic fibrosis?"
CF has also meant that I've found my strength, passion, determination, resilience, and compassion. It has meant that I've been able to walk through this life with my eyes and heart wide open, never taking anything for granted. It has helped shape me in so many ways that I can't help but be grateful for the good things that have come from this ugly disease.
But one day, I'd really like for CF to mean... well, nothing. I want it to be cured! For myself and the other 70,000 people in this world who are fighting the same battle.
The past couple years have been pivotal for our community with the approval of the groundbreaking drug Trikafta. The future is brighter than ever! But there is still work to do. Trikafta is not beneficial or accessible to all, and it is not a cure. With your help, we can continue making strides toward that cure. Please consider donating, walking with us, helping raise funds, or sharing this page (or the linked YouTube video).