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Hi Kelly,The delta f508 is the most common mutation. I know many here on this board and on other boards who have double delta f508 and they have heard the same thing as you. The strange thing is that most of them are pretty healthy, comparitively speaking. So, I think that like so many things...

Mom to a CF daughter,I think if you had read the full posts of the people saying that Delta f508 was the "worst" mutation, you would have seen that they all go on to say, either in their original post or in subsequent posts how healthy they have been and the different experiences of people they...

Franky or Anyone,Do you know how that list of classes would relate to a splicing defect in the gene? i couldnt figure out if/how a splicing defect would effect the synthesis of CFTR. I suppose it depends on where it is in the chain?Andrea

Thank you Mary!We all have our own reasons for having or not having children. My hubby and I have yet to decide if we will have another child, knowing that we are carriers. If Rachel didn't have CF, there would be no question about it, we would have had another child by now. But we are still...

I know a woman from another group who is in her mid 60's. Not every person with CF "spends the rest of their life in the hospital" If this lady had given it all up at 16, 50 years later we wouldn't have her as an insipration to the rest of us. At 16 it might just be the need for an attitude...

Franky,Is ther a list of the mutations with their classifications anywhere? I am having trouble figuring it all out.Andrea

That is great to hear Franky! Congratulations! I hope all goes well with the pregnacy and everyone is healthy.Andrea

Hi Franky,Rachel is well. she hasn't really been sick much in the past three years. If someone had asked me if Rachel's CF was severe in her first 2 years of life I would have said "Yes, very severe". She was in and out of the hospital a lot. Now things have calmed down and she hasn't been...

We did not know that we were carriers of CF when we had our daughter. She wasn't even diagnosed until she was 9 months old. We all need to make our decisions about having more children or not, knowing that CF is an illness that CAN cause our children a lot of suffering. If we choose to "roll...

A ha! I got it to work that time!!!!! Rachel's Mutations are G551D and 1898+1G>A (I get confused about the < or> signs, I might have that wrong) As I understand it the G551D mutation is associated with pancreatic insufficiency- quite true of Rachel. It is also associated, I think with...

Frankycould you give that address again? I tried what you put in your post, but I can't find anything for that address. It just says "we can't find......" I would really like to investigate my daughter's mutations and I can't find any info on one of them and just a bit on the other...

Hi Abi,My daughter has CF and in a way it is a hidden disease. At this time, if you look at her you would never know that she has anything "wrong" with her healthwise. But it is not socially unacceptable.CF is not just "their" problem though. It is the problem of the whole family and...

to the first post, I am just wondering, if your parents were able to have testing during their pregnancy with you and they found out that you had CF , would you have preferred that they abort you? Is your life THAT terrible that you would have chosen not to live it? Most of the people who I...

Hi Christie,Congratualtions! There are 2 tests that can be done Amnio and someting called CVS. CVS takes a sample without a needle through your stomach and can be done sooner, but there is a higher risk of miscarriage with it. So if you can wait for a few more weeks the amnio is probably...

Yes that is the one that Rachel was on. She was shown in the begining getting her height and then later they showed me hooking her up to her tube feed. I missed the one that this thread was about though. Andrea

I was told by one doc that carriers are occasionally symptomatic. Some may even have extremely mild cases of CF and never be dx'd because they may have a rare mutation. I hope this helps.Andrea

Hi,The problems your son is having could be CF. My daughter had pretty normal looking poops until she was about 6 months old when her respiratory problems kicked in it seems that her digestive issues came up too. when she was born her pancreas was functioning but as she got bigger it became...

Is this the Discovery Health Channel? My daughter was filmed in clinic and a bit at home for the DHC series called lifeline (you see her in the begining). The epispde was filmed at CHoP in Philadelphia. I wonder if it is that show.........Andrea

Hi,That first reply is partly right about the chances if you are both carriers, it is: a 50% chance that if you are both carriers that the child would be a CARRIER, 25% chance that the child would be CF mutation FREE (not even a carrier) and25%chance that they would HAVE CFAs I understand it...

My daughter usually takes them all at the begining of a meal unless we are out at a restaraunt where we are being served. It usually takes much longer to get each part of the meal when they serve you so we spread them out then. I have heard all sorts of things about enzymes. There is a woman...