Where can I find out about cystic fibrosis?

[Hulababy]

Dh has just phoned me to tell me that his "friend through work"'s DD - aged about 18 or 19 months - may have cystic fibrosis. I have meet the couple and their DD once before recently. The DD is a lovely little girl, very small for her age and not yet walking - but nearly. I know that the little girl has been quite poorly on and off for most of her life so far. Andthe couple have had her at the hospital for numerous tests, etc. And are continung to do so. I don't think this is a definite dx yet but it maybe looking likely.

We are meeting up with them again soon - so the two girls (their DD and my DD) can play and get to know each other. And I can get to know the mum better too.

Before then I would really like to find out more about CF. At the moment I know almost nothing about it, and would hate to come across as ignorant and do/say something that may be insenstive unintentionally.

So, does anyone know anything about CF? Or have links to useful sites that I can go and educate myself with?

Thnaks in advance.

this one looks good.

HTH

Fio2, sadly, knows loads about it as her sister, who sounds lovely, died of CF. You could look at the CF Trust website, and I will happily answer any scientific questions. Basically it is very likely to shorten her life and be an ongoing problem with infections, but she may be fine for large amounts of that time. I have a friend with it who is now in her thirties; I have known her since she was tiny, and she has had lots of bad time, but lots of good times too.

It's very nice of you to be approaching it so sensitively.

Snap, Tissy!

Thank you. Fio has sent me the link and some information via another site. I just want to be able to say the right thing and not be completely ignorant about it all when we meet up next. I will look throuh all the info in much more detail over the next few days.

tamum - I have only just this minute read about the affect on life expectancy

Hulababy, what you just have to try and focus on is that this is the life expectancy as things stand. Only a few decades ago the life expectancy was teens. There is a clinical trial starting next year in the UK for gene therapy, and new developments all the time. If your friends' dd does have CF and gets through the next 20 years (which is highly, highly likely) then who knows what treatment will be available. I am not very optimistic in terms of the next 5 years, but beyond that there's a really good chance that something will be developed.

Thanks tamum. Their Dd is not much younger than my own DD and I can only imagine the shock it must be for them, But what you say is so reassuring and right, developments may well be so advanced as their DD develops and gets older. I really am glad that I have some links and sites to find out more now.

I know, it always hits home particularly when it's a child the same age as your own, doesn't it? If they've been having a hard time it may even be a bit easier once they know what they're dealing with, tough though the diagnosis sounds. There are quite well established ways of dealing with infections now, treating them very aggressively so as not to let lung damage develop, so it's always worth getting a diagnosis from that point of view. I'm sure the parents will really appreciate the fact that you've taken time to find out about it.

a little boy in my ds's class has cf and he told his mum when he grows up he's going to live on a cloud He can be quite poorly and is underweight and does have to spend time in hospital but other than that he's a perfectly normal little boy with no issues or hangups - he just gets on in there!!! Jumping is apparently very good as treatment and his mum organised a "big bounce" in aid of CF early this year at school. We had a bouncy castle loaned to us and the kids paid to go on. Also they wore their own clothes and I think she raised about £700. Space hoppers are apparently excellent as are trampolines.

I think that they will take some comfort from having a dx. I know they have been so worried about their DD as she has been poorly so much in her short life - just one thing after the other. And I know they were so worried about the affects after she had her MMR jab - she has been pretty much proorly ever since and the mum has been feeling so guilty over it

Thanks jampot

My friend told me that her ds was dx at about 6 months after failing to thrive. One of the symptoms is they taste salty so she used to pass her ds round and ask people to lick his face. She had to go through testing again when she had her dd - but she's tested negative.

just want to agree with tamum about the life expenctancy of people with CF. My Parents were told my sister would only live until she was 7. When she was 7 they said most probably she would live until she was 15. She actually lived until she 21. Which is still short but tbh we didnt 'expect' her to die so soon. She died from a pulmonary embolism follwiing routine surgery, but she was ill at the time. In a way I am glad she died like this and not in a drawn out process of being ill, although she always WAS ill (we just got used to it) She always knew she was going to die and was never scared of death. I cant write anymore as it is upsetting me.

But we know loads of people with CF who are living into their 30's and 40's even now. We went to a rememberance service at Birmingham cathedral. It was to mark the opening of a new adult unit for CF patients and to rememeber those lives that CF had taken. It was nice to see old faces that used to be in Birmingham Childrens with my sister but also sad not to see some of them. But the point is 20 years ago they never used to have adult units because people with CF never used to reach adulthood and here at this service there was their oldest patient whop got up and said a poem. He was in his 40's and still hadnt reached the stage where he would be considered for transplant.

The treatments are wonderful now. My sister was guniea pigged for most of them! I have a pretty grim view of CF because my sisters was so severe and she developed the majority of the complications CF can bring and also needed a heart/lung transplant to add to her life. But apart from the CF she was wonderful, we wouldnt have been without her and I miss her so much.

I have waffled on and I have only wrote a snippet of something. I could write a book on everything tbh. I think you just have to be sympathetic but dont bring it up unless the other mum wants to talk about it. Dont be all gloom and doom either. I met a woman who's son was awaiting diagnosis and I could TELL he had it. I just talked to her as normal, let her talk and I listened. If I'd have told her what Ive had known the poor woman would have most probably cracked up!

Thank you Fio It must be very hard for you so I really appraciate the information and insight you have passed on.

This may not be the most appropriate place to post this message...but my ds is going into hospital next week for 3 days for tests to try and determine why he gets so many infections of the chest and ears. As part of the testing he is having a sweat test for cystic fibrosis.
Ds is 4 years old now - and this has come as a big shock to have to contemplate something like this - I've always been so focused on his heart and various other problems. He is also having a CT scan and various scans of his liver/spleen etc, and maybe a bronchoscopy too.
I have found the site mentioned below very useful as some background reading for 'preperation'. Thanks.

Hope everything goes okay for you slightymad. Maybe they are just trying to rule the CF out as they left it quite a long time to test

Good luck slightlymad. I hope all does well for you and your family.