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  1. K

    in reference to urgent message to worried grandma and candi81

    hi everyone i need some thoughts and advice. refer to 'urgent message to worriedgrandma and canid81'. what do people feel on the issue of children testing positive for cf (positive sweat test, newborn screening, and two genes found) however regarding this child as cf free. This assumption was...
  2. K

    URGENT MESSAGE TO WORRIEDGRANDMA AND CANDI81

    Iam aware that your child/grandchild have the same gene mutation as my son. I was wondering if you could offer your help. After attending our cf clinic on monday, our consultant has now said my son should no longer be considered as having cf, or atypical cf. I have then said I wish to stop...
  3. K

    information on gene mutations

    my son was diagnosed after a sweat test result of 75 at 8 weeks old. he presents no symptoms at present. since then the lab has concluded he has two faulty genes, F508 and C2657+2_2657+3insA. Our consultant from the royal sick kids in edinburgh has limited information on the second gene so can...
  4. K

    GENE MUTATION

    Hi folks, we got confirmation of a second gene mutation yestarday. Our consultant however has had no experience with the second gene as none of the 120 patients at the royal sick kids in edinburgh have this gene. The lab has concluded he has F508 and C2657+2_2657+3ins17 (previously known as...
  5. K

    GENE MUTATION

    Hi folks, we got confirmation of a second gene mutation yestarday. Our consultant however has had no experience with the second gene as none of the 120 patients at the royal sick kids in edinburgh have this gene. The lab has concluded he has F508 and C2657+2_2657+3ins17 (previously known as...
  6. K

    Thank you everyone

    To all those who replied to my message thank you so much for your kind words and advice. It is good to know there are others there to show support and an inspiration to hear how positive everyone is. I will keep in touch in regards to Nathan's progression. Thank you so much katie
  7. K

    uncertain about the future but trying to stay positive

    Hi I am a young mum from Edinburgh in Scotland, UK. Yestarday it was confirmed by cf staff at the royal sick kids edinburgh my son has atypical cf. He is 6 weeks old and presents no cf symptoms at present. His stool sample has come back negative and staff have said it appears he is pancreas...
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