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Cystic fibrosis diagnosis

Posted , 4 users are following.

fiona89941
fiona89941

After years of being weak chested I have finally been diagnosed as having cystic fibrosis. The tests/ screening was only done after I requested it following the birth of my grandson who was tested positive for the condition after a few days old. 

I have now been tested and confirmed and anm now under the care of the adult cystic fibrosis unit in Leeds. 

I wish thus had been discovered a long time ago to prevent damage from repeated mistreated chest infections. My twin is now having sweat test etc.

it seems lots of adults are now being tested for this condition.

0 likes, 3 replies

3 Replies

  • Patient99
    Patient99 fiona89941

    Posted

    Doctors playing at being God, again and again - trouble with GPs is that they get very little training on so many aspects (a myriad, in fact) of healthcare that they can't be expected to know too much about most things - trouble is, they hate to be pointed in the right direction, and take it as a personal affront if you ask for a second, or particularly specialist, opinion  - isn't our NHS wonderful!?
  • lunger95
    lunger95 fiona89941

    Posted

    Hey there!

    I'm curious to know, did you notice any other symptoms of the disease besides the chest infections and such? I've been a CF patient for 20 years now and it's been a pretty tough thing, but my case is actually mild. I just wonder if you noticed anything throughout the years. 

    Thanks for sharing your story!

    -JMC

  • philkev1802
    philkev1802 fiona89941

    Posted

    hi

    i was born 6 weeks prem and i am now 28. My parents were told i would always have prblems with my chest as i go through life. I was tested for CF when i was born which come back negative. I have gone through life having chest infections from time to time through the years and in 2012 i was diagnosed with pnumonia. I fought it off and 6 weeks ago i contracted septis pnumonia and plurality. This has not shaked off now for 6 weeks and today i  have been given a new type of antibiotic along with prednisone steriods which i alwayd have when i come down with an infection. Could i ask whether you went through the same thing before i got tested? I was told aswel by a GP that for someone to contract pnumonia twice in a lifetime is 1 in 10''000. So i guess im a special case haha. 

    Hope your well.

    many thanks in advance 

    phil

    liverpool UK

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