Cystic Fibrosis CARRIER

I got my genetic testing results back and it turns out that I'm a carier for Cystic Fibrosis! This caught me really off guard. No one in my family that I know of is a carrier or has the disease. Also, because generally African Americans have a 1 in 19,000 chance of being a carrier vs.Caucasians who have a 1 in 3,000 chance. My parents are from Cape Verde, speak Portugese and have ALOT of Portugese ancestry.The OB is thinking I got a recessive gene from that linkage.

Did any of you test positive for being a cystic fibrosis carrier or any other genetic issues?

My husband is scheduled for genetic testing on the 10th to see if he is a carrier too. I'm feeling really scared and anxious about the results. Dealing with diabetes and pregnancy is stressful enough, without all this extra anxiety! :-(

I was nervous about getting ours done because my husbands father suffered with MS a long time before he died. But we were relieved to find out that it wasn’t common for it to be inherited.

My question for you is - let’s assume your husband is a carrier (which he’s probably not), what would your chances be then? 1 out of 20,000? 1 out of 20? I really have no idea, but a lot of times even people who test ‘badly’ still have a astronomical chance of it actually happening to them.

Do you know the numbers on how likely it would be?

FYI - ususally the doctor will give you a “You’re are THIS likely to have this happen…” and then give you your families specific ratio based on your situation.

Its already rare that I am a carrier, if he is too it would be super rare. If we both are carriers then this child or any other future children would have a 25% chance of having full cystic fibrosis, a 50% chance of just being a carrier like me and a 25% chance of being completely healthy. I’m going to talk more abuot it with my OB on the 19th. I’m just really worried about it and trying to come to terms with the fact that i’m a carrier, myself :frowning:

Hi Kathy,
There is sooo much to worry about-try (easier said than done) to not worry about it if you can! The chances your husband is a carrier is very small, right? Also, I was just at Dr Takoudes’ today and have to go back on the 19th as well! (The baby was just a little too small to do the neuchal screening) What time is your appt?! Maybe we will run into each other?

Cystic fibrosis is more common in Ireland than anywhere else in the world. As far as I know the chances of being a carrier is 1:19. Our population here is tiny (approx. 4 and a half million) and this is why we have such a high incidence of it. It does run in my family. A second cousin has it. I was never offered nor thought about going for genetic testing prior to getting pregnant. Is this normal in the States? Thankfully, none of my immediate family has it and none of my husbands family have it either.

If its really is that uncommon in African Americans I wouldnt worry about your husband having it. However, I realise that is easier said than done. If your husband is due to have genetic testing anyway next week, dont think about it until his results come back. I am sure you have nothing to worry about.

First thing first… and I know this is hard… but for right now it’s not in your control… pregnancy is a stressful time no matter if you are 100% healthy or hearing that their may be a potential… that a problem can occur. Now since all you can do is wait I would a) NOT read anything on google that could scare you… and b) NOT assume anything… the doctors will do their job, and until they tell you that there is a problem…assume that there is no problem… hang in there! I did not test positive on any genetic issues while I was preggo… but I was told everything from my baby could be a still born because of the diabetes to the organs may not develop normally… in the end my healthy baby girl was born at 8lbs 3 oz…

Hello, I work with pregnant teens and none of them had genetic testing offered to them. My cousin who is pregnant now, had it done but she specifically requested it. My OB brought it up at the first visit and asked if I wanted to do testing for it. I guess it depends on the doctor and a patients risk level. It’s interesting that in Ireland that they dont do it routine considering how common it is.

I hadnt ever thought about it to be honest. Perhaps if it is the family it is offered but I’m not sure. Interesting how I hadnt even thought about though, considering I worked with CF’s for 4 years and also a 1:19 chance of carrying the gene just because of our small gene pool is an extremely high chance!

UPDATE: My husband’s doctor called him yesterday and confirmed that he is NOT a carrier! PHEW…The baby cannot get cystic fibrosis! I’m sooooooooo relieved! :slight_smile:

Thanks for all the support and reassurance. You guys were right all along :slight_smile:

Delighted to hear that Kathy!