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  1. H

    Symptoms in 2 month old?

    Your son sounds exactly like what my parents described to me as my first weeks. I was Dx by sweat test at 6 months. Prior to that I was labeled as failure to thrive and had the same presentation as your son.
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    Need asperilligos information please im beginning to wander if i have this

    I doubt it would be overlooked. I do agree that it seems you have a raging sinus infection and it could very well be seeding your lungs. If you have been describing your pain, smell, vision and hearing symptoms and they aren't doing anything about it, you need to find a new doctor and quickly...
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    Need asperilligos information please im beginning to wander if i have this

    I doubt it would be overlooked. I do agree that it seems you have a raging sinus infection and it could very well be seeding your lungs. If you have been describing your pain, smell, vision and hearing symptoms and they aren't doing anything about it, you need to find a new doctor and quickly...
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    Am I overreacting?

    Epigenetics might have some answers. Other than that, I don't know. I have 2 of the nastier mutations. It goes to show that genotype doesn't predict phenotype.
  5. H

    Am I overreacting?

    Epigenetics might have some answers. Other than that, I don't know. I have 2 of the nastier mutations. It goes to show that genotype doesn't predict phenotype.
  6. H

    Am I overreacting?

    I agree with Twist, you dose yourself with Pseudomonas every time you shower. As a kid, I was into everything. Playing outdoors, water parks, swimming in pools, lakes, streams. I didn't culture Pseudomonas until I was 23. Luck? Maybe. I am, however, very grateful for the childhood I had.
  7. H

    Am I overreacting?

    I agree with Twist, you dose yourself with Pseudomonas every time you shower. As a kid, I was into everything. Playing outdoors, water parks, swimming in pools, lakes, streams. I didn't culture Pseudomonas until I was 23. Luck? Maybe. I am, however, very grateful for the childhood I had.
  8. H

    Need asperilligos information please im beginning to wander if i have this

    Well, have you ever cultured aspergillus? Aspergillosis, or more specifically, Allergic Broncho Pulmonary Aspergillosis (ABPA), is a condition where one cultures aspergillus and is allergic to it. The aspergillus colonizes the mucus in your lungs and comes in contact with epithelial cells in...
  9. H

    Need asperilligos information please im beginning to wander if i have this

    Well, have you ever cultured aspergillus? Aspergillosis, or more specifically, Allergic Broncho Pulmonary Aspergillosis (ABPA), is a condition where one cultures aspergillus and is allergic to it. The aspergillus colonizes the mucus in your lungs and comes in contact with epithelial cells in...
  10. H

    DF508ers who participated in VX-770 trials

    I don't know, I'm not involved with the project.
  11. H

    DF508ers who participated in VX-770 trials

    I don't know, I'm not involved with the project.
  12. H

    DF508ers who participated in VX-770 trials

    Here is one: <a href="http://streaming.cff.org/media/NACFC11-Plenary2.wmv">http://streaming.cff.org/media/NACFC11-Plenary2.wmv</a> The official page is not live yet, it's still being curated.
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    DF508ers who participated in VX-770 trials

    Here is one: <a href="http://streaming.cff.org/media/NACFC11-Plenary2.wmv">http://streaming.cff.org/media/NACFC11-Plenary2.wmv</a> The official page is not live yet, it's still being curated.
  14. H

    DF508ers who participated in VX-770 trials

    <div class="FTQUOTE"><begin quote><i>Originally posted by: <b>jmiller</b></i> One friend of mine participated and saw improvement in PFTs. </end quote> I don't think that double delta patients were included in the study. Any improvement was likely from the correction of his gating mutation, or...
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    DF508ers who participated in VX-770 trials

    <div class="FTQUOTE"><begin quote><i>Originally posted by: <b>jmiller</b></i> One friend of mine participated and saw improvement in PFTs. </end quote> I don't think that double delta patients were included in the study. Any improvement was likely from the correction of his gating mutation, or...
  16. H

    What song do you relate your CF fight to

    Originally posted by: anien2 Originally posted by: idkillu4adollar How about Gloria Gaynor " I will Survive". That's a great song for a Cfer... as long as he is gay. Where the %#$ did that comment come from? School kids make gay jokes, let's be adults shall we?
  17. H

    African safari

    ACapella device or a flutter? Or see if you can talk an ape into doing manual CPT <img title="Sealed" src="include/wysiwyg/tinymce/jscripts/tiny_mce/plugins/emotions/img/smiley-sealed.gif" alt="Sealed" border="0" />
  18. H

    African safari

    ACapella device or a flutter? Or see if you can talk an ape into doing manual CPT <img title="Sealed" src="include/wysiwyg/tinymce/jscripts/tiny_mce/plugins/emotions/img/smiley-sealed.gif" alt="Sealed" border="0" />
  19. H

    CF adults w/ chronic joint & mucle pain

    I've tried with the joint muscle pain at UPMC, KG. No luck. They had no idea and no intention of investigating since they wouldn't admit it could be CF related. I'm changing clinics, I'm tired of the BS.
  20. H

    CF adults w/ chronic joint & mucle pain

    I've tried with the joint muscle pain at UPMC, KG. No luck. They had no idea and no intention of investigating since they wouldn't admit it could be CF related. I'm changing clinics, I'm tired of the BS.
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