Kira Case
One of my favorite humans has cystic fibrosis. She tells her story better than I could:
"The CF foundation supports people with CF in many ways, from legal and insurance advice, to connecting people with needed grants. But the foundation spends all of its money on research. Research that has saved my life many times and funded the development of Trikafta which has made it possible for me to hear a little voice call me "mama".
But there are 2 problems with trikafta.
First, it is not a cure. I was recently reminded that my new found health is not as strong as I would like when a simple flu landed me back in the hospital like the "old days". Getting sick is still far more serious for me, and even when I'm well keeping up with a toddler is harder for me.
Second, it does not help everyone. Trikafta is mutation specific, meaning it only helps some of the CF population. Even people who's genetics suggest the can be helped do not always see the kind of benefit I do, or experience such extreme side effects that they cannot take it."
"The CF foundation supports people with CF in many ways, from legal and insurance advice, to connecting people with needed grants. But the foundation spends all of its money on research. Research that has saved my life many times and funded the development of Trikafta which has made it possible for me to hear a little voice call me "mama".
But there are 2 problems with trikafta.
First, it is not a cure. I was recently reminded that my new found health is not as strong as I would like when a simple flu landed me back in the hospital like the "old days". Getting sick is still far more serious for me, and even when I'm well keeping up with a toddler is harder for me.
Second, it does not help everyone. Trikafta is mutation specific, meaning it only helps some of the CF population. Even people who's genetics suggest the can be helped do not always see the kind of benefit I do, or experience such extreme side effects that they cannot take it."
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