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Type: Posts; User: StellaTX

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    Does anyone know how soon we can get Symdeko? My...

    Does anyone know how soon we can get Symdeko? My Vertex case manager emailed me yesterday to let me know that my childrenís mutation would be a candidate for Symdeko. They are currently on Kalydeco....
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    No, newborn screenings didnít go into effect...

    No, newborn screenings didnít go into effect until 2007 (after they were born).
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    Yes, actually Kalydeco is being shipped tomorrow....

    Yes, actually Kalydeco is being shipped tomorrow. Iím looking forward to getting my kids started on it. Especially, the one that has been symptomatic.
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    Kenna2, thank you so much for your support and...

    Kenna2, thank you so much for your support and very kind words. These diagnoses have brought on such a lonely feeling in a very unfamiliar way. It is almost too much to process. Iím glad to have the...
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    2 teen siblings diagnosed

    My two children were just diagnosed very late 16, 13 yrs old with F508 c 2657+5G>A. Such a shock for all of us. We are so devastated. I feel so bad that we did know sooner. I pray that they havenít...
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