Diagnosed in infancy, I'm no stranger to infections and hospitalizations, but somehow I always remained hopeful that medical science's ability to treat infections would outpace them.
This changed about three years ago.
A relentless, resistant infection started taking over my lungs. Perhaps the worst part was that with each telltale physical symptom came another even more difficult emotional pill to swallow (intentional pill pun). My new normal meant repeated hospitalizations that took me away from family, my career, and friends. I felt like the joy we had felt just last year about the approval of tezacaftor/ivacaftor (Symdeko®), a CFTR modulator therapy, was overshadowed by the inadequacy of available antibiotics to treat my current symptoms.
As I was starting to lose hope, my CF care team found research that showed successful treatment of an infection like mine by using a nebulized medication that I was allergic to in other forms. Despite the lab tests' prediction that this type of treatment wouldn't work, we tried it, and it was the first treatment in well over a year that kept me off IV medications and gave me back my life as I wanted it.
More importantly, the treatment restored my hope. Hope that allowed me to welcome a second son into the world! It was after I'd just fed and snuggled my newborn that I saw the application from Community Voice to become a CF community member co-chair for the Cystic Fibrosis Foundation's Infection Research Initiative Steering Committee in my inbox.
I told my husband, “I have to do this. It is why I have this life right now.”
At the first steering committee meeting, I offered my story, along with what I saw in the CF community's sense of urgency, for better ways to treat infections. My words, along with the stories shared by other community members in the meeting, were met with compassion, curiosity, and surprisingly, even a little bit of “let's go” confidence (as my 8 year old would call it). This is not what I expected, since the majority of the meeting reflected the reality that the science of infections is incredibly complex and overwhelming.
During our lunch break, one of the doctors on the committee asked us about this complexity and how we thought the initiative might make the community feel. Would we feel frustrated that many questions about infections were not yet answered? Would it bring hope? In that moment, I felt a rush of hope for myself and my community. If a room full of the field's leading scientists and -- perhaps -- the world's most well-known venture philanthropist organization were ready to solve these big problems, then I have faith that they will be solved. My wish is for everyone dealing with difficult-to-treat infections, whether a new culture, or a decades-long battle, can feel this hope and reprieve from the worry of “no more treatment options.”
I realize that the reality of CF is that an infection may one day outpace my ability to manage it. But, the commitment of the Foundation, scientists, and our community keep me hopeful that we can figure out ways to keep up with infections and maybe even experience a few big life wins along the way. So let's go!
Note: If you want to get involved in the next wave of applicants for the steering committee or take part in other initiatives at the Foundation, join Community Voice to get notified of these and other opportunities.
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