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Hi Katie - regarding your question about a dominant gene, what they may be referring to is that the mildest mutation <i> usually </i> governs the expression of symptoms. That is why carriers typically don't have any symptoms. They have enough functionality of the CFTR from their non-mutated...
Hello and welcome. I am sorry for the diagnosis - it can be a tough and overwhelming time. I am glad you have come here for information and support. As I'm sure you have discovered, there is lots out on the internet about cystic fibrosis. Some of it is out-of-date and even wrong. But please...
Hello and welcome. I am sorry for the diagnosis - it can be a tough and overwhelming time. I am glad you have come here for information and support. As I'm sure you have discovered, there is lots out on the internet about cystic fibrosis. Some of it is out-of-date and even wrong. But please...
Hello and welcome. I am sorry for the diagnosis - it can be a tough and overwhelming time. I am glad you have come here for information and support. As I'm sure you have discovered, there is lots out on the internet about cystic fibrosis. Some of it is out-of-date and even wrong. But please...
Wow! I also watched the video. Those young people are very determined, well-spoken, and clearly motivated by love of their sibs to be really great advocates! Thank you so much for sharing this story, and congratulations and gratitude to Neil for participating.
Wow! I also watched the video. Those young people are very determined, well-spoken, and clearly motivated by love of their sibs to be really great advocates! Thank you so much for sharing this story, and congratulations and gratitude to Neil for participating.
Wow! I also watched the video. Those young people are very determined, well-spoken, and clearly motivated by love of their sibs to be really great advocates! Thank you so much for sharing this story, and congratulations and gratitude to Neil for participating.
Hi Elizabeth! We started the TIGER-2 Phase 3 Denufosol trial in June of 2008 when DD was 5. I don't know if we were on the placebo or not. Then we began the open-label extension in July of 2009 so we know we are on the drug. Clinically, we are steady or slightly improved on PFT's, weight...
Hi Elizabeth! We started the TIGER-2 Phase 3 Denufosol trial in June of 2008 when DD was 5. I don't know if we were on the placebo or not. Then we began the open-label extension in July of 2009 so we know we are on the drug. Clinically, we are steady or slightly improved on PFT's, weight...
Hi Elizabeth! We started the TIGER-2 Phase 3 Denufosol trial in June of 2008 when DD was 5. I don't know if we were on the placebo or not. Then we began the open-label extension in July of 2009 so we know we are on the drug. Clinically, we are steady or slightly improved on PFT's, weight...
Our daughter is 7 and going into second grade. She has had primary responsibility for enzymes (remembering, and how many) at school starting with Kindergarten. She has only forgotten a few times.
Since she can take all of her oral meds in pill form now, we use the week-long pill organizers...
Our daughter is 7 and going into second grade. She has had primary responsibility for enzymes (remembering, and how many) at school starting with Kindergarten. She has only forgotten a few times.
Since she can take all of her oral meds in pill form now, we use the week-long pill organizers...
Our daughter is 7 and going into second grade. She has had primary responsibility for enzymes (remembering, and how many) at school starting with Kindergarten. She has only forgotten a few times.
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<br />Since she can take all of her oral meds in pill form now, we use the week-long pill...
I am looking for tips and stories about if/how you make a blood draw go better for your child from the lab and technician standpoint. It's not preparing and handling my daughter that I have questions about. We have a pretty good system. What I need help with is how to ask/tell the lab techs...
I am looking for tips and stories about if/how you make a blood draw go better for your child from the lab and technician standpoint. It's not preparing and handling my daughter that I have questions about. We have a pretty good system. What I need help with is how to ask/tell the lab techs...
I am looking for tips and stories about if/how you make a blood draw go better for your child from the lab and technician standpoint. It's not preparing and handling my daughter that I have questions about. We have a pretty good system. What I need help with is how to ask/tell the lab techs...
Lyndsi - how is Cameron doing now?
Pete - welcome!
Our daughter was diagnosed with CF at age 3 and cultured non-mucoid pseudo at her first clinic visit. It was mainly GI problems that lead to her diagnosis. So when the doc called with the culture results, I couldn't believe that we were...
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