Recent content by StellaTX

Does anyone know how soon we can get Symdeko? My Vertex case manager emailed me yesterday to let me know that my children’s mutation would be a candidate for Symdeko. They are currently on Kalydeco. I contacted our CF doctor, and the nurse said that they were waiting on their Vertex rep to meet...

No, newborn screenings didn’t go into effect until 2007 (after they were born).

Yes, actually Kalydeco is being shipped tomorrow. I’m looking forward to getting my kids started on it. Especially, the one that has been symptomatic.

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. I’m glad to have the support of others going through it.

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 haven’t suffered too much damage. One of them shows no symptoms at all. The other had bronchitis off and...