I know someone who is over 40 with a double DF508, works full time, has been overwieght at some points in her life, and does pretty well overall day-to-day (with the help of many treatments/therapies)...she was that last of like 8 kids and the only one with CF.
About the bell curve thing, when do you think it is safe to say whether someone has a mild mutation or case? My daughter is 2 with a DF508 and an Unknown Mutation. She takes about half of her allowed enzymes, 50th % height and weight, hardly ever sick, etc. I never know if I can assume she has a mild case or if I am just waiting for her health to change dramatically to decide or if I should just not even think about it (right now I am thinking the latter is the best way to go!).
My thoughts on DF508 - when Sydney was diagnosed I read about this "severe" mutation and prayed that she would not have it. Of course, shortly after we were told that she does have one copy of it, I realized that it is actually good to have at least one copy of DF508 since it is the most common mutation and that is what the therapies are targeting (especially the gene correction thing - wish I knew the more technical term for it!)
To Deidre, Congrats on your baby girl! Hopefully this whole thing will help you get closer to your cousin, I am sure she would love to have your support (especially with new TWINS - which is just great!). I hope neither of your daughter's have CF and the rest of your pregancy is smooth and uneventful!
Hugs,
Kelli (mom of Sydney 2wcf)
About the bell curve thing, when do you think it is safe to say whether someone has a mild mutation or case? My daughter is 2 with a DF508 and an Unknown Mutation. She takes about half of her allowed enzymes, 50th % height and weight, hardly ever sick, etc. I never know if I can assume she has a mild case or if I am just waiting for her health to change dramatically to decide or if I should just not even think about it (right now I am thinking the latter is the best way to go!).
My thoughts on DF508 - when Sydney was diagnosed I read about this "severe" mutation and prayed that she would not have it. Of course, shortly after we were told that she does have one copy of it, I realized that it is actually good to have at least one copy of DF508 since it is the most common mutation and that is what the therapies are targeting (especially the gene correction thing - wish I knew the more technical term for it!)
To Deidre, Congrats on your baby girl! Hopefully this whole thing will help you get closer to your cousin, I am sure she would love to have your support (especially with new TWINS - which is just great!). I hope neither of your daughter's have CF and the rest of your pregancy is smooth and uneventful!
Hugs,
Kelli (mom of Sydney 2wcf)