Does Anyone Know Anything About Cystic Fibrosis?

I'm not exactly sure what kind of information you are looking for but the CFF website is a great place to start.

www.cff.org

As far as the baby is concerned, both you AND your husband would have to be carriers of the gene and the baby would have to get one copy from each of you to have the disease. If only one of you has the gene then the baby is only at risk of being a carrier.

So in a nutshell:
If you AND your husband are carriers, the baby has a 50% of just being a carrier, a 25% chance of having the disease and a 25% chance of being clear of the gene altogether.

If only one of you is a carrier, the baby has a 50% chance of being a carrier and a 50% chance of being clear of the gene altogether.

Hope this helps some!

Hi S.,

My niece is living with CF and she is 7 yrs old. This was something we did not find out until she was almost 2. It has been hard for her living with CF and the lifespan is different for every patient. Some live to their teens, others to their adult life.
Jill O pretty much summed it up for you.....if your husband is NOT a carrier of the gene then your baby has no chance of having CF. Is your husband going to get the blood test?
I would think that's all you need to ease your fears.
BTW, I am one of 4 girls.....all of my sisters carry the gene, I do not and only one of my sisters had a CF child. You didn't mention if your previous children are all from your husband but if they are then more than likely one of them would have had CF by now if you were both carriers.
So to ease your fears, many people are carriers but that does not mean your baby will have CF.
Take care and congrats on your pregnancy!

Hi S.,

I have a 26yr old son with CF, what would you like to know about it? If you like you can e-mail me at ____@____.com.

A.

I'm not an expert on CF, but did have a longtime childhood friend with the disease. It affects the digestive system as well as the lungs. Last time I talked to her was when we were both 40. She is married and has 3 children. Both parents have to be carriers of the CF gene in order for a child to actually have CF. Keep reminding yourself that worry can just bring on stress and won't help anything (I know, much easier said than done). Go ahead and let them run the tests so they can rule it out and put you at ease.

Sorry I couldn't be of more help.

I know (from 5 year old research when my OB was trying to talk me into amnio because she thought my daughter had it). That thanks to advanced enzyme, antibacterial, and IV treatments the average life span for CF now is in the mid 50's. That makes it less devastating (IMO) than Huntingtons.

I refused any further testing because there was NO WAY I was terminating my pregnancy .

Oh - btw, that baby was a boy.

No CF.

No problems at all, actually. :)

S.

I wouldn't worry about it. If the baby is born with CF, its muuuch better that they catch it this soon. I have a 24 yr old cousin who that didn't catch until he was about 3 or 4, and he has suffered with it all his life, but at the time didn't think he'd make it to age 16, now he has graduated from TCU with two degrees, living on his own, and has a successful job. He has a 19 yr old brother who doesn't have it, and then a 7 yr old sister who has it, but they knew to check and caught it so early, she's fine, as long as she does her treatments every day and takes her medication she's fine, you'd never know she's different than any other kid!
I wouldn't worry, of course you and your husband have to be both carriers... I had myself tested too... its not a bad thing to do!!