One of my favorite things I did when I was younger was visit the CF database and search for the mutations my sister and I share — we are the only two people in the entire database that have our specific combination. There we were, side by side, just as we were in the car on the way to school, in our beds discussing our day, and on the couch doing vest treatments and playing Mario Kart. Two sisters who are on the other side of the divide from those who benefit from CFTR modulators — among the 10-15% who do not.
My sister and I, who I will call Kay, have been through a lot together. While we were juggling the common sisterly battles of learning how to co-exist — fighting over the bathroom, talking about friendships and crushes, and playing in the nearby pond — we were also learning how to look out for each other as people with cystic fibrosis. We would ensure the other took her enzymes and bring gifts or games when she was hospitalized. I would keep a brave face during throat swabs to make it look like no sweat to her, and we would mutually complain about the bitter taste of tobramycin. There are many things we have done to make life easier for each other, but there are some things we can’t soften — like watching others receive a life-changing treatment we’re not eligible for.
Kay and I have nonsense mutations, meaning we don’t qualify for life-altering drugs like Trikafta or Alyftrek. While our hearts are beaming for those who can, it also brings up a slew of complex emotions. There’s sorrow, and often jealousy, when we see people smiling with their first few doses of a medicine that will change everything for them. There’s a deep ache when I watch my sister culture another lung infection. Or when we struggle to breathe in the summer air. Or when one of us is rendered bed-bound from intense “I missed my pills” stomach cramps, knowing others are now living a life that resembles normalcy. How can this be fair when those of us in the last 10-15% get … nothing? How do we remain hopeful when it feels like the world may move on without us?
Hope, for us, is braided with grief, and then tied off with guilt. But our fight isn’t over. Not yet. Those of us in the last 10-15%, and the community surrounding us, must work to keep our focus on advocacy, raising awareness, fundraising, and shining an uncomfortable light on the sentiment that this isn’t won until it’s won for everyone. We must remind the world that the last 10-15% aren’t a footnote, or an unfortunate statistic, or the few that get lost among the many. We’re still here. Still fighting. Still hoping. Still deserving.
Kay and I will keep going, together, until we can join in the celebrations around us. We hope you’ll stand alongside us.
Interested in sharing your story? The CF Community Blog wants to hear from you.
