When your life is already jam-packed with nebulizing medications, why would you add one more?
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Before you can walk a mile in a person with CF's shoes, you have to put on a nebulizer.
Aim is to Provide Cystic Fibrosis Patients Enhanced Access to Medications and Expanded Pharmacy Services
I struggled emotionally after learning that after negative carrier and newborn screens, my son had cystic fibrosis. I’m now advocating for people with rare mutations.
My son, who is Black, has cystic fibrosis. It seems like just a normal fact of life, but I have become frustrated with having to convince doctors that he really does have CF. I hope that one day people of color won’t have to have the same experience.
Update: On February 3, 2017, the Cystic Fibrosis Foundation divested its remaining ownership stake in CF Services Inc., a specialty pharmacy. The pharmacy is now fully owned by Walgreens.
I felt so alone as a kid being gay and having CF — there weren’t any role models in the 80s and 90s that I could look up to. Eventually, I found people who understood what I was going through and that helped me feel good about who I was, and who I am today.
At first, it was easy to get my son to do his cystic fibrosis treatments. But as he got older, he started to hide his medications, rather than take them. I finally learned how to get him to see the importance of taking his medications.
Having already been underwhelmed by Orkambi® and Symdeko®, I was skeptical about whether the triple-combination therapy would live up to the hype. However, after a month of being on Trikafta®, I feel improvements in my lung function, weight, and overall energy.
After years of being treated as an oddity, I want people to acknowledge that I am a Black girl with cystic fibrosis. I want my voice to be heard.