The imagination can run wild thinking of all the possible scenarios that could happen after trying the new triple-combination modulator, Trikafta™. Managing expectations -- while allowing yourself to hope -- is how I choose to approach my wait for the new drug.
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As a CF pharmacist, I've received many questions about complementary and alternative medications and supplements over the years. Although I am admittedly not the first person to “jump at the idea,” I always make sure to stay informed about available products and listen to my patients without judgement so that we can partner together to develop the best treatment plans for them.
When the news of the Trikafta™ approval came out, I was simultaneously excited for people with CF that would benefit and disappointed that another new medicine is passing me by. But, hearing about the next wave of research into a cure for ALL people with CF has me looking forward to the future.
I am both excited and scared that my son will be old enough to try Trikafta when he turns 12 later this year. In some ways, I can hardly wait to see how he will benefit. But I also know that he might experience side effects, and I don't want him to have any setbacks.
We depend on antibiotics to help us control and get rid of dangerous infections. But, in addition to the near-miraculous power to heal, many antibiotics come with serious side effects, too.
I began taking prescribed medication to control my cystic fibrosis-related pain. Soon, the medication tried to control me.
On my first international trip, I found myself in an interrogation room explaining my port to security officers.
When my daughter was diagnosed with cystic fibrosis, I found it difficult to explain this disease to my parents in Spanish, and I also felt alone in my rural community. That is why I think it is important to bring CF awareness to the Hispanic community.
As a black man with cystic fibrosis, I am in a minority group within a minority group. I waited my whole life to find someone I could easily relate to until I happened upon a Facebook group for post-transplant patients.
My children’s experiences being African American with cystic fibrosis motivated me to speak out and ignite change for families who are Black, Indigenous, and people of color (BIPOC) in the CF community.