The Other 10 Percent

When I learned about Trikafta, I was thrilled and moved to tears. It was a bittersweet moment for me. I was happy beyond belief for the CF community. I was excited knowing how many CFers are going to benefit from this medication and thrive like they never could before.

10 percent of us do not qualify for Trikafta

I was also sad for myself. I fall in the 10% bracket of CFers who doesn’t have the mutations required for Trikafta. Therefore, I have to continue to wait for my miracle drug. I know and feel in my heart that my turn is coming one day, but I only hope that I am alive to witness it.

Cystic fibrosis carries unique sets of challenges for every one of us that deal with it every day. My CF journey has been difficult. I was diagnosed in my early twenties, primarily due to my unique and rare mutations. Since I did not fit into the typical CF profile, I was rejected from CF centers. I was lucky enough to find a CF center that handles unique and rare mutations, and there I have thrived.

We keep fighting!

Over the years, I’ve met other CFers who changed my life for the better. My friends were the most unique beings that you could ever meet. We web chatted while doing therapies and web chatted while in the hospital. I know they could have benefitted from Trikafta, as they were F508-del.

They sadly lost their lives to CF, both ineligible for transplants. However, they both changed my life forever. They helped me believe in myself and and fight for my own life. They taught me to never give up and to get better with any and every ounce of me that I can.

New drugs for cystic fibrosis bring hope

Trikafta represents “hope." While I do not qualify for it, it still excites me. It excites me because I know that my turn is next. It excites me because I know science is advancing so much that CF is at the forefront of advancements of what’s coming for the CF community as a whole.

Ninety percent of the CF population now as an exciting chance to get better in ways that we ever thought possible! It’s an exciting thing when FEV1s are going up higher! When hope is ignited, it’s contagious. I am looking forward to what’s next, looking forward to what the next drug is going to be for the 10 percent of us still waiting. We at least have hope in what’s coming our way as well.

CF is unique for us all. While I am sad that I can’t try Trikafta, I am excited to see other CFers lives changed because of it. I love seeing smiles take the place of frowns on any face of a CFer. One thing that I loved hearing at the NACFC (North American Cystic Fibrosis Conference) was that while Trikafta represents a huge step forward in treating CF, the work is not over until CF stands for "cure found." Instead of 90 percent qualifying, it’ll be all of us!

Are you part of the 10 percent? Join our forum for people with rare mutations.