General Chat

having just discovered that my great neice has cystic fibrosis and is very poorly and she is only 8 weeks old, family and friends are asking me all sorts of questions. this is because I am a nurse but know little about this othet than that which can be found on the wb.
is there any one out there who has a child with this condiition who could offer some greater insight.
Thanks bridget

nudge for Bridget

Please read this, and if anyone has any knowledge or a family member with this condition pleas reply

bridget

Dear Mrs BossyBoots

Hello

I found this:

www.cftrust.org.uk
There is info about the illness.

CF Helpline

A confidential service that enables anyone to obtain advice, support and information on any aspect of Cystic Fibrosis.

Tel: 0845 859 1000

Hope this helps

Very sincere wishes
xx

Elizabeth thank you for the PM, I have replied.
To everyone else if you have experience of caring for someone with this condition please get in touch or leave a message on here.

if you have a belief please say a prayer

thank you

bridget

I know a girl in my son's class who has it and my niece lived till she was 16yrs old but myself don't know much about it

I don't have any experience but I do know that the earlier it is detected the better the outcome.

I have a friend who is the oldest (that we know of) living person with cystic fibrosis. He was 7 when he was diagnosed, he's now 38.

My uncle (I never knew him) died of cf.

Tbh I know very little about it, although I should do really.

I worked with a young boy with CF a number of years ago..... we had to give him regular physio, which included pummelling his back, ribs and chest to loosen the sticky mucous.... he also needed to take creon to help digest his food, so everything was carefully controlled and weighed to get the right dosage.... he needed to be isolated from children with colds etc (it was a residential school)

I believe that there is now a great deal more that can be done... and heart/lung transplants have proven successful.

This little mite's parents will have a lot of hard and tiring work ahead of them.... we would be exhausted after each bout of physio, and we were in teams, so didn't do it all the time, there was always someone else to take over.... I seem to remember about 6 times a day, and often at night, as well. They will need lots of support from family and friends... and her 5 year old sister will need extra special attention, too... siblings of a sick child are so often forgotten, but they suffer too.

I have lit a candle, BB

Love

Daff xxxx

My son suffers from Cystic Fibrosis and has to take a lot of medication and has physio at least twice a day. When he was younger, he spent a lot of time in hospital and we were told, at the time, he would not live past 5 years old. As he got older, we were told he would never work etc. My son is now 42 years old, has a regular full time job and is living in his own flat. He still has to attend hospital regularly and if he gets a chest infection, will usually be admitted so that they can keep an eye on him and give him antibiotics through a drip.

The CF Trust were very helpful and I received a lot of information from them when he was first diagnosed (although that was many years ago), but I am sure they are just as good today.

Best wishes
Val

sending my thoughts and prayers for you little great niece
hoping she gets treatment to help her ,

i dont know much about this illness but know of children who have suffered it
they do have good treatment that helps with symptoms

There is a lot of support out there,have you looked at the Cystic Fibrosis Trust site ?

I also was a nurse in the days when survival from this condition was just a few years-before anti biotics-yes I am that old !!

I like your name bossyboots-my mother always complained that the trouble with nurses was they were "so bossy" !