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Date Joined Apr 2010
Total Posts : 1
   Posted 4/18/2010 10:13 AM (GMT -6)   
Hi there
My little sister of 10 yrs old has cf & gets daily enjections & the charity/ organisation where we live has to raise the money for treatments & the right medication she needs as the NHS dont pay or they may pay some of whats needed- im not 100%.
Can this disease cause her death & what is the average life expensity?confused
I want to help with charities & raise money/volunteer etc also.
It kills me as ive only recently met her as i got back in touch with my dad as i was living elsewhere. ive got another 2 sisters, 4 of us altogether & its only the youngest that has this disease.
Could you plz reply
Kind Regards

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Date Joined Feb 2007
Total Posts : 1050
   Posted 4/18/2010 1:22 PM (GMT -6)   
Hi Foin, welcome to the forum!!

You're living in the UK I take it? Just the mention of the NHS, we're the only ones who call it that I think, though I may of course be wrong.

What sort of CF medications aren't available? I'm thinking most are available on the NHS in the UK, and all CF medications are available from a CF centre. Some GP's can be awkward gits, and sometimes they will only give you meds if you really really need them, but they can still be collected from a CF centre is this is the case.
I know like our CF centre at the minute are raising money for a new unit. The CF Trust were supposed to pay for some of this, and the NHS the rest, but I think all have pulled out, so now they have to raise funds themselves. This can sometimes mean cutbacks on none-urgent meds-but currently our unit is actually some how ok (start of financial year perhaps, or maybe they are getting close to the target, or patients health has dropped overall on the unit and they have finally come to realise that a new ward would be amazing, but patients still need care in this time.)

I don't wish to scare you, but if I don't put it here, then you'll only read it elsewhere, as they use these stats in all of the advertising. CF is known as life-threatening and current life expectancy is about 40. Though about 10 years ago, we were looking at an expectancy of 21, so things are improving greatly. For a 10 year old today, their expectancy is even better, the younger people with CF are at this present time, the better their chances of leading a normalish, longer life is.

I hope this helps some, and provides you with some answers that you need. If you need more than this, then post. We're happy to offer you with the support you require, and maybe able to provide some answers to things you may be questioning.

I have just last year met 2 of my brothers. We knew they existed, but they didn't know about us, I hunted them down as I thought they needed to know. I'm still worried how much of CF to let on to them, I don't want to scare them, they are 8+10 years younger than me. I also have another brother with CF and a sister without.

Hope you are well
Moderator of the Cystic Fibrosis Forums
Diagnosed with: Cystic Fibrosis, Asthma, ABPA, Clinical Depression, Mild Liver Cirrohsis, Mild Osteopenia, Erythema Nodosum. Waiting for final diagnosis on Muscular Dystrophy type symptoms.
Medication: Creon 10,000, Vitamins A,D+E, Salbutamol, Paracetamol, Tramadol, Nefopam, Ursodeoxycholic Acid, Trazodone, Slow-Sodium, Azithromycin, Metachlopromide, Omeprazole, Tobi Ineb, Folic Acid, Adcal-D3. I use PEP and Flutter device as my physio as well as the occasional ABC when bored. Had a Port-a-cath fitted on chest wall since Nov 04
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Sometimes, I feel that I should go and play with the thunder - then I get scared and run away.
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