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    • #14549
      Jenny Livingston

        Hi friends, for today’s WCW — we’re doing something a little different. Today we have Emmanuele, who is 22 years old and is from Rondonia, Brazil. We asked @emmanuele.machado to share a little of her story with CF, while living in Brazil. Be sure to answer her Q in the comments:

        🦁I’m 22 years old and live in Vilhena, RO. I’ve spent a lot of my life coughing up blood, but in spite of it, love watching Naruto while doing nebulizers, eating bread with meat, and singing out loud while dancing and when I’m home alone! I want to say, warriors never give up.

        🦁Here in Brazil, we don’t have access to new medications. A few people do get them (new medicines) but only through many battles in court. But, those are only a few people. We fight everyday, kill lions with our own teeth. We face death more times than we can deal with. We fight lack of medication, lack of information, we appeal to the justice system, and learn both medical and legal terms. We fight so much, we sometimes end up violent.

        🦁Last night I had a dream that I was admitted in the hospital, and I received news that Trikafta was almost the cure. I cried a lot. It was only a dream — I do hope that I am able to use Trikafta, alongside my CF friends here. Right now, in Brazil we have a campaign to register Trikafta in the Brazilian equivalent to the FDA (Anvisa). We have been campaigning a lot, and even started a hashtag to help build attention to the issue. #registravertex

        Question: What REALLY matters to you?

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