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9 replies

haven · 25/06/2005 00:49

can anyone tell me about CF and when it came into their family, and how it came about.

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HappyHuggy · 25/06/2005 01:00

Hiya Haven

theres not many people around on a night time and the boards move less over the weekend too,

i dont have any advice but wanted to let you know you wern't being ignored

haven · 25/06/2005 01:02

thanks, us so time difference. it is hard for me to actually discuss real time

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HappyHuggy · 25/06/2005 11:39


dizzy34 · 25/06/2005 11:51

Hi, i dont have a child with cf but a friend of mine does. i will try to get her to log on here to chat to you. However, she is older and doesnt always use the internet so if you want to e mail me your details it may be possible for you to share info by post if you want. My email is [email protected]

happymerryberries · 25/06/2005 11:59

I don't have any family experience of CF but I can explain a bit about how it is passed on.

The CF gene is the most common genetic condition in the white population in the UK. One person in every 25 carries a copy of the CF gene. But unless you have two copies of the gene you don't get CF.

So both parents have to carry a copy of the CF gene and have passed it on to their child if the child has CF. If you are both carriers you have a 1 in 4 chance of having a child with CF.

As to how it came about, no-one realy knows when it came about or why it is hanging around. Tamum knows a lot more about this than I do and I think she once said it may give a survival advantage againt some diseaes in the past.

Have you had a diagnosis?

Littlefish · 25/06/2005 12:45

While we were ttc, we were referred for tests as things just weren't happening for us (2 years ttc). We found out to our amazement that DH is a CF carrier.

No-one in his family has CF or has said that they are a carrier. We have told DH's parents so that they can get tested if they want as one (or possibly both) of them must be a carrier too. Obviously there are implications for DH's cousins. As far as I know, DH's parents have not been tested. I think they're finding it a bit hard to get their heads round as there is no family history at all, they may not realise what this might mean to other branches of the family.

We had genetic counselling when we found out, but it took about 8 weeks for us to get the appointment. We had no idea what the implications were for our ttc or any future children. I was also tested, but I am not a carrier. This means that our dd could be a carrier, but could not have CF. We have been told that we should have dd tested when she is about 14-16 and old enough to understand the implications, but before there is any chance she might want a baby. Obviously if she is a carrier, then future partners with whom she wants to have children will need to be tested. Apparently 1 in 25 people is a CF carrier. Our GP told us that as it is so common, there is now research being done into the implications of including it in post-natal or pre-natal screening.

We have also found out that the type of gene mutation DH carries can cause infertility in men.

Not sure if this is the sort of info you need, but hope it helps.

haven · 25/06/2005 18:21

actually it helps a great deal, i didn't realize that both parents had to carry the gene.

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Littlefish · 25/06/2005 19:09

There is a CF society web site - I used Google to search for it when I wanted information.

If you have just found out that either you or your partner is a carrier, the hospital might be able to give you genetic counselling. It was really informative and gave DH and I a chance to ask lots of questions. The counsellor was great, answered all our questions at the appointment, but then wrote to us as well so we could refer back to all the information at a later date.

If you have only just found out, it is a real bombshell. However, it's really common, and so many people who are carriers never find out, unless they are having trouble conceiving (in which case I think it is one of the standard tests they do), or have a child who is CF.

Hope you find the information you need.

haven · 25/06/2005 20:48

thank you all very much. it probably isn't anything like this. but with all the respiratory problems since birth, he has been ill constantly with asthma related problems, bronchiolitis, pneumonia, yada yad, and now the bowel issues. it may very well be parasites, or bacteria, or heck not a damned thing, but with ds history sure you could understand why CF keeps popping up in my search for the mucous. (thread in behavior and developement)lots of moms say it could be just diarrea but this isn't diarrea (can't spell LOL) slime, mucous, nasty....anyway you have been most helpful. i will assume that we (parent) do not carry that gene. and therefor shouldn't have anything to be worried about.

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