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  1. C

    Vertex Patient Assistance Program

    Thank you Kenna2 i would love to get a head start with enrolling my daughter in a clinic that when it is available she will have access. Any idea how I go about enrolling? Do I just walk in to a local clinic?
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    Vertex Patient Assistance Program

    Hi there. I live in South Africa, my daughter is 11 with CF. We are USA citizens. Does anyone have any idea how I can register to get the 3 in one drug that’s out now? Any info would help! Thank you. Yocheved
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    Mass of mucus in chest

    Also to hold breath for a bit when huffing could be helpful. I’ll let you know how it goes. It’s amazing to have a community from all over the world!
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    Mass of mucus in chest

    These are all such helpful ideas, thank you for your help, really makes me feel that we are not alone. I will speak to our Dr about the IPV and bicarbonate
  5. C

    Mass of mucus in chest

    Thank you Ratatosk, I appreciate your advice. I will increase the nebs and physio and drinking more is a good idea thank you!
  6. C

    Mass of mucus in chest

    Dear fellow participants, my daughter with CF who is 11 years old is struggling to fall asleep these days. She is huffing and coughing so hard trying to clear her chest but can’t get it up. We try percussions and breathing techniques and only small bits come up. Any ideas?
  7. C

    could tobi cause pinkeye?

    i was interested to see that you brought this up.we use Gentamycin nebs. and my 2 year olds eyes get very red every few weeks. they get bad and than get better after a few days. i recently took her to the opthamologist who has no idea what it is. he agreed though with my thought that the mist...
  8. C

    could tobi cause pinkeye?

    i was interested to see that you brought this up.we use Gentamycin nebs. and my 2 year olds eyes get very red every few weeks. they get bad and than get better after a few days. i recently took her to the opthamologist who has no idea what it is. he agreed though with my thought that the mist...
  9. C

    could tobi cause pinkeye?

    i was interested to see that you brought this up.we use Gentamycin nebs. and my 2 year olds eyes get very red every few weeks. they get bad and than get better after a few days. i recently took her to the opthamologist who has no idea what it is. he agreed though with my thought that the mist...
  10. C

    could tobi cause pinkeye?

    i was interested to see that you brought this up.we use Gentamycin nebs. and my 2 year olds eyes get very red every few weeks. they get bad and than get better after a few days. i recently took her to the opthamologist who has no idea what it is. he agreed though with my thought that the mist...
  11. C

    could tobi cause pinkeye?

    i was interested to see that you brought this up.we use Gentamycin nebs. and my 2 year olds eyes get very red every few weeks. they get bad and than get better after a few days. i recently took her to the opthamologist who has no idea what it is. he agreed though with my thought that the mist...
  12. C

    Does it ever end?

    i can really understand what you are going through..it definitely feels like that on some days..i think one of the toughest aspects of dealing with my baby having CF is that it is an ongoing lifelong condition. unfortunately it's not something that 'gets better'. but i have experiences as i am...
  13. C

    Does it ever end?

    i can really understand what you are going through..it definitely feels like that on some days..i think one of the toughest aspects of dealing with my baby having CF is that it is an ongoing lifelong condition. unfortunately it's not something that 'gets better'. but i have experiences as i am...
  14. C

    Does it ever end?

    i can really understand what you are going through..it definitely feels like that on some days..i think one of the toughest aspects of dealing with my baby having CF is that it is an ongoing lifelong condition. unfortunately it's not something that 'gets better'. but i have experiences as i am...
  15. C

    Does it ever end?

    i can really understand what you are going through..it definitely feels like that on some days..i think one of the toughest aspects of dealing with my baby having CF is that it is an ongoing lifelong condition. unfortunately it's not something that 'gets better'. but i have experiences as i am...
  16. C

    Does it ever end?

    i can really understand what you are going through..it definitely feels like that on some days..i think one of the toughest aspects of dealing with my baby having CF is that it is an ongoing lifelong condition. unfortunately it's not something that 'gets better'. but i have experiences as i am...
  17. C

    my two year old doesn't want to nebulize and very very hoarse voice

    ok..here are 2 questions for this wonderful team who i dont know at all but feel a part of...firstly, my 2 year old, Tehilla with CF has a very very hoarse deep throaty voice. it's been this way since we started nebs. and IV antibiotics but i think it's getting worse. should i worry? is there...
  18. C

    my two year old doesn't want to nebulize and very very hoarse voice

    ok..here are 2 questions for this wonderful team who i dont know at all but feel a part of...firstly, my 2 year old, Tehilla with CF has a very very hoarse deep throaty voice. it's been this way since we started nebs. and IV antibiotics but i think it's getting worse. should i worry? is there...
  19. C

    my two year old doesn't want to nebulize and very very hoarse voice

    ok..here are 2 questions for this wonderful team who i dont know at all but feel a part of...firstly, my 2 year old, Tehilla with CF has a very very hoarse deep throaty voice. it's been this way since we started nebs. and IV antibiotics but i think it's getting worse. should i worry? is there...
  20. C

    my two year old doesn't want to nebulize and very very hoarse voice

    ok..here are 2 questions for this wonderful team who i dont know at all but feel a part of...firstly, my 2 year old, Tehilla with CF has a very very hoarse deep throaty voice. it's been this way since we started nebs. and IV antibiotics but i think it's getting worse. should i worry? is there...
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