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-   -   Cystic Fibrosis, can anyone give me some practical info? (https://www.askmehelpdesk.com/showthread.php?t=215409)

  • May 13, 2008, 02:07 AM
    Questions2007
    Cystic Fibrosis, can anyone give me some practical info?
    I would be interested in hearing from anyone who has any practical experience of living with cystic fibrosis, whether themselves or a relative/friend/partner.

    The reason I ask is that one of my friends suffers from it. We have a lot in common, and it may be that we get together as a couple. She told me about it very early on, and on a day to day basis it does not seem to affect her massively and seems to be very under control.

    She is 23, but keeps her lung capacity right up by doing exercise most days, running, cycling etc. She does get chest infections but seems to get over them very quickly, and does not let the infection stop her doing her exercise etc.

    But I am naturally very cautious, I realise is is a degenerative illness, and people always get worse (I noted the average life expectancy is about 35), but I also realise that medical advances are improving every day (I see in the 1960's the life expectancy was aged 10).

    What do I need to know? Any thoughts would be appreciated.
  • Feb 27, 2009, 09:50 PM
    torrid19
    I'm 15, and I have Cystic Fibrosis. I take good care of myself following instructions from my doctors, and I don't personally find my CF stops me from doing anything. I have been extremely fortunate with my disease, I play OYSL soccer and am extremely athletic. I'm not sure quite the answer you were looking for, but I can give reassurance on that if your friend takes care of her self well, then there shouldn't be many issues, of course I'm only fifteen and haven't noticed my disease worsen with age.

    Recently I have been thinking about the life expectancy and I'm sort of getting worried.
  • Feb 28, 2009, 06:16 PM
    Survivor07

    Ask her. She sounds like she does a beautiful job taking care of herself.

    None of us know how long we're going to be here.

    People with CF just need to take care of themselves and follow their care plan.

    You're exactly right, though. Who knows what the next 20 years of medical research may bring. Be hopeful and live for today. Nobody knows what's in store tomorrow!

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