cystic fibrosis

[Skeptical]

My 4 day old nephew has just been diagnosed with Cystic Fibrosis, the whole family is completely devasted as I have cousin who died from this horrible disease when she was only 8.

Does anybody have any positive stories about CF they could share please to give us hope?

So sorry to hear about your nephew.

My niece has CF. She is now 19, lives with her fiance and has a job. She is careful to take all her meds (now anyway, she rebelled in her early teens and frequently ended up in hospital) and looks after herself. We all know she will have a shorter life span than her peers but for now everything is as well as it can be.

She wasn't diagnosed until she was 4 and her brother does not have it. When she was diagnosed I was pg with DS2 and we were given blood tests to see if DH and I were both carriers, I'm not, he is.

Our own DC will have to checked with their partners before starting their own families because where both parents carry the CF gene the chances of a baby being born with CF are 1 in 4.

I work in a hospital and we have a CF patient (in and out as she needs us) who is now in her mid 20's.

I've no recommendations from personnel experience but I'd always point to the NHS website and it's links to patient groups.

I'd look at the film Red Roses.
Not all good news but still worth a view.

I also found Atul Gawande's "The Bell Curve" a good discussion.

Hope they are of interest.

my daughter has CF. she was diagnosed aged 4. Up to the age of 7 she was in and out of hospital with breathing difficulties but has been really well for the last 2 years. (she is 9 now) To look at her you would not know she has CF (she has only the lung problems and no digestion problems at the moment and her CF is quite mild.
We did have 1 bad scare where we told her lung was scarred after a bout of pneumonia but it healed itself and she is fine now. she does horse riding and swimming and is really active. she does have daily meds and needs physio but it is managable. We try and let her live her life and not wrap her up in cotton wool - next year she will be going on a week long school residential trip- I manage to work full time and also manage her hospital appointments. we go abroad but get special insurance and take a stock of antibiotics with us just in case. It does take a long while to get over the news but i tend not to think about it so much now (5 years on from diagnosis) we have an excellent CF nurse who came into dd school and did some training with the staff.

I am so sorry about your cousin I am obviously lucky that dd is not severely affected at the moment.

Thank you all for your thoughtful and encouraging posts. The shock has worn off a bit now and we are a lot more positive. I think our family history automatically made us all think the worse but now we have realised that the outlook for a baby born with CF has improved greatly compared to one born 30 years ago.

Can anyone recommend any good charities or support groups for my sister and her Husband?

My colleague was born with CF and I think must now be almost 30. She did have a heart and lung transplant some years ago and since then is no longer considered to have CF as the new lungs are clear of it. She will be on anti-rejection meds for the rest of her life but is living a fairly normal life.

Please get in touch with the Cystic Fibrosis Trust. They are amazing, and helped our family. www.cftrust.org.uk/

I hope this will be a positive story for you, i have also told it to my best friend whose neice has been diagnosed with CF.
My nan has always had a terrible time with her health, especially lungs. Always had it passed off as infections or this and that. Her mother,and her mothers mother all apparently had bad lungs, constant coughing and flemming etc. Cystic fibrosis wasnt really recognised back then and because of the short life expectancy she was never tested for it once they discovered the testing. Why she was tested for it i dont know but my nan at the grand old age of 82 has just been diagnosed with cystic fibrosis. Her consultants have never met someone so old, especially with out ever having any treatment, she says she feels like a celebrity at her clinics everyone is so amazed she has reached the age she has done.
We now all have to be tested for the gene, as my mum was tested after my nans diagnosis and does carry it.
Hope this helps x x

definitely get in touch with the CF Trust, they are really good. My 4 yo DD has CF and I know what your family are going through now although I am glad to say that things have got better over the years.

the main thing i would say is that by being diagnosed at birth your nephew is going to get the right treatment from the word go which will give him the best possible future. Do make sure that he is being seen at a specialist CF Centre (The CF Trust can provide a list of all the UK centres) or at a hospital that is linked to a centre as he will get the most up to date treatments based on the best knowledge of the condition

Tell your family to get to be 'best friends' with their GP and local chemist as they will need to be picking up regular supplies of medication, sometimes at short notice and invariably at doses higher than given to 'healthy' children which can cause some raised eyebrows.

I won't deny living with CF can be crap at times but it shouldn't stop your nephew leading a totally normal life. I have just spent most of today at a park with DD and her friend and she out ran her and outrode her on her bike time after time. She did not stop running around apart from a quick break for lunch and I am hugely proud of how well she is.

good luck, life with CF can still be good

My relative with CF is 40, very happily married, father of two and in full-time employment. He has had issues over the years (chest infections, constipation, now diabetes) but is rarely in hospital. He leads a very full and enjoyable life (e.g. tennis twice a week) and that's even after a rebellious teenage phase when he stopped looking after himself and even smoked (!) If you put him in a roomful of people, he'd be the healthiest-looking person in there. He was always told he couldn't have children, but IVF (ICSTIS) has changed all that.

Really the prognosis nowadays is very different from when he was born. I echo what others have said about the CF Trust. It helped my relative's parents enormously in the early days, and all these decades on they still do fund-raising for it religiously.

I agree with mintyneb about hospital and pharmacists- my relative has had excellent care at the Royal Brompton, and from the same people over the years, so they really know him well. His pharmacist delivers all his medecines to save him having to go in, and is brilliant at getting stuff for him, making sure he never runs out etc. Things like that make a big difference.