I am hoping and praying that is true as well...
I will add a few prayers for you as well.
Hello Mark and welcome to Healing Well!
Sounds like your niece is getting all the correct testing done and hopefully will do fine. Cystic Fibrosis is progressive. How fast or in what varying degrees is not readily known as there are a lot of factors that can play a rule in how each person is affected (even twins with the same exact mutations can present with different symptoms). Genetics and environment are just some of the factors that can make a difference in outcomes.
The main thing is that she gets diagnosed properly, starts therapies and has support from loved ones - it seems like she has that covered!
This has just blown us out of the water...
None of us knows what do or think.
I am glad I found these forums.
Any other info or thoughts you or anyone else has will be welcome news.
Post Edited (SnotGun) : 5/31/2007 11:31:25 AM (GMT-6)
From what I have learned (my 2 year old son has CF) there are many varying degrees and symptoms of CF. The day my son was tested, there was a family with 3 kids all getting tested, because their father who was in his 30's was just diagnosed. Is that weird or what?
Most of it depends on the mutations identified. Someone has to have 2 mutations (one from mother, one from father). The most common is the deltaF508. There are 32 common mutations that most labs can pick up on, but literally thousands of other more rare mutations that can only be identified by blood tests from specific genetic labs.
I know a man that has 2 children with CF, ages 11 and 13, and they have mutations that have never affected their lungs. He said both kids have pancreatitis, one so severe that he couldn't eat for 2 months and just had to use a feeding tube to let the pancreas rest and recover. His kids are just small and have the pancreas problems - so you can see there are lot of degrees of CF.
Have you been told the names of the mutations your niece has? They can only be identified from the blood test, not the sweat test.
Catie just went in for the blood test yesterday Friday June 1st.
So weh ave to wait about 2 weeks to get it back...
We are hopeful but not sure what to expect..
Post Edited (Citty) : 11/11/2007 10:53:54 PM (GMT-7)