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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 mary on June 24, 2000 at 10:35:37:

In Reply to: Re: Four-month old granddaughter diagnosed with gastrointestinal CF posted by lisa on June 24, 2000 at 06:36:29:

C.F.does affect the G.I.and lungs and sinuses etc, my daughter has C.F. she is 15 and when she was diagnosed , her lungs were not affected at that time,when she turned 4 years old,her lungs started to become affected. You may want to ask your doctor about this. Look for a Cystic Fibrosis Clinic in your state , usually they are in hospitals for children. Hang in there!!!:Our 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

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