cystic fybrosis any one with children suffering from this ?

Just had a visit from health visitor and a specialist nurse to tell us that out 21 day old baby girl has got cystic fybrosis. talk about the cricket bat to the face moment. we kinda over the shock now and gearing for aour first visit to a specialist clinic tomorrow. so was just wondering if anyone out there has any children with this ? googling for it is just plain wrong as brings up doom and gloom and looking for a slightly more optomistic source of info lol

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  • turtlemoose
    turtlemoose Posts: 1,640
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    Hi, my brother had CF, so I haven't experienced it as a parent, but has always been a part of my life.

    Please have a look at the cystic fibrosis trust website http://www.cftrust.org.uk/

    I find their website informative and factual - and they have forums on there too.

    Treatment has come on leaps and bounds in recent years.
  • Grimbal
    Grimbal Posts: 2,334
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    edited 31 October 2012 at 3:43PM

    Please have a look at the cystic fibrosis trust website http://www.cftrust.org.uk/
    .

    definitely spend time on that website. They'll be links to your local CF support group on there - get in touch with them, they'll be able to provide you with lots of help, support & information

    ETA: http://www.cftrust.org.uk/aboutcf/newdiagnosis/
    "Science is a wonderful thing if one does not have to earn one's living at it" Einstein 1951
  • Artytarty
    Artytarty Posts: 2,642
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    My friends son has it too.
    He is 26 has a degree and a good job.
    He has his ups and downs but is generally well. I know he has to take a cocktail of drugs and enzyme powders to help him digest his meals but he is a lovely well adjusted young man.
    Norn Iron Club member 473
  • lika_86
    lika_86 Posts: 1,745
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    Have a look and see if Channel 4 still have two documentaries on Alex Stobbs on 4od, truly amazing young man (with CF) http://en.wikipedia.org/wiki/Alex_Stobbs
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