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Type: Posts; User: KateLarge

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    Hello Madiha, lots of love to you. Can I ask if...

    Hello Madiha, lots of love to you. Can I ask if you have a CF team? over in the UK we do, and they take care of so many of these questions for you. If you have a team assigned, get them working on...
  2. You need to have G551D for this to work, so save...

    You need to have G551D for this to work, so save your money! Better to to wait for meds for your genes x
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    Hello again and congrats! Yes, the elevated IRT...

    Hello again and congrats! Yes, the elevated IRT is a signpost for CF, that's what they look for in the heel prick and how they decide to send those samples on for further testing. Our daughter has...
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    I carry the DF508 gene and have never had any...

    I carry the DF508 gene and have never had any CF-like symptoms ever. So for me, no, it's not true.
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    There is definitely a balance to be struck. When...

    There is definitely a balance to be struck. When our daughter was diagnosed we told the village because it was such a big deal, we were very upset and could never have hid it. We also put an...
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    There are several ways to define a pagan as well...

    There are several ways to define a pagan as well as just not one of those main religions, but that's another story! I am a pagan but not polytheistic. I don't have CF myself, my daughter has CF. I...
  7. Thread: DNA UK

    by KateLarge
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    4,400

    Heather! Thanks so much for the message, this...

    Heather! Thanks so much for the message, this gene combo is not very common so I am dead keen to find other other parents! Freya has her second Annual Review last month, and did so well! She is...
  8. You have two copies of DF508? It is very rare to...

    You have two copies of DF508? It is very rare to be pancreatic sufficient with that gene, and to be picked up so late! Your story will inspire many with that same genotype. In the UK, a CF diagnosis...
  9. Amazing! Could I ask what genes you have? Find a...

    Amazing! Could I ask what genes you have? Find a centre specialising in CF and get the meds you need. Blessings to you x
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    All babies pass meconium. But not all CF babies...

    All babies pass meconium. But not all CF babies have meconium ileus, our daughter passed her meconium totally normally so we had no idea she had CF until the heel prick revealed it (we are in the...
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    Please be reassured! Your child has exactly the...

    Please be reassured! Your child has exactly the same gene combo as our daughter, it's quite rare so I would love you to keep in touch. I know I can't say your child will be same as ours, as each...
  12. Thread: DNA UK

    by KateLarge
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    4,400

    Hello! Our daughter, who is two years old in...

    Hello! Our daughter, who is two years old in March, has the DF508 and R1162X mutations. It's a real puzzle as I am from Northern Ireland (DF508) and my husband English (R1162X) so the latter gene in...
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    I also have a small daughter with the...

    I also have a small daughter with the DF508/R1162X combo. As rightly said, be careful, as I myself found the profile of a beautiful young woman with the same genetics who I later found had actually...
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