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Re: Four-month old granddaughter diagnosed with gastrointestinal CF

Re: Four-month old granddaughter diagnosed with gastrointestinal CF

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Posted by Deb on August 03, 2000 at 01:31:58:

In Reply to: Re: Four-month old granddaughter diagnosed with gastrointestinal CF posted by Leslie on June 26, 2000 at 13:14:38:

Dear Pam.
I am 48 years old and similarly diagnosed as your baby as an infant. Went through alot with pancreatic involvement, it did also affect my gastrointestinal tract.for the first seven or eight years of my life then remarkably I started to gain weight and my digestion got much better. I took enzymes during those years. My health was relatively good for many years. I was more vulnerable to infections and it did take alittle longer to get over colds and flus. In recent years i have had repeated pneumonia and chronic coughing, bronchitis,and bronchiacstasis. I am considered to have mild cf. good luck with your granddaugahter:and know that it is possible for your granddaughter to have a full long life. I have two wonderful children who don't have cf. I wish you and your family all the best. Main thing is to make sure she given the proper care and lots of love and from your concern I'm sure she will be.
Deb : :

ur family is still in shock over my 4 month old granddaughter's diagnosis of gastronintestinal CF. We've been exploring the net for more information on this type, but can't seem to find much on it. Most of the info is on the pulmonary type. If anyone out there has information or experience with gastro.. CF, we'd appreciate hearing from you.

: : : Thanks, Pam

: :
: : Dear Pam,

: : I don't know if you've been misinformed or maybe are confused about CF, but there is no gastrointestinal (only) CF. I have two daughters with CF, one is 19, and the other is 14. I know that there are some who are only mildly affected and that they mainly have the digestive problems, but CF is CF and it affects the lungs, pancreas, liver, and sweat glands of the affected person(s). They say that it depends on the type of mutated gene the parent carries, my ex husband and I both carry the Delta 508, and my older daughter is quite ill at this time, (alot of lung involvement) while my younger one is VERY healthy, always has been. So I don't really trust that theory all that much! Let's hope that your grandaughter only suffers from pancreatic involvement, but if she starts having pulmonary problems, don't despair, there is ALOT they can do for her these days ALOT more than they could do 19 years ago, that's for sure!! I consider myself very knowledgable re: CF so if I can be of any help to you, please feel free to e-mail me @ [email protected] Keep the faith! Lisa

: Lisa,

: About the genetics of CF and the varying health of your daughters. Probably each daughter received different "modifier" genes. These genes could account for the differences in their health. I think the scientists know that the modifier genes are there, they're not sure how to identify them yet. Next step. Anyway, the conference held in Seattle this past April is online if you'd like to hear more. The address is My 17 month old son has CF - diagnosed at birth. We consider ourselves lucky to know he has CF so early so we could treat him from the start. He's doing very well. In the future, I may have questions for you so I'll hang on to your email address if you don't mind. Leslie

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