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    Yes I have the same question! Is this...

    Yes I have the same question!
    Is this Elexacaftor or something else ?
    This is very exciting either way!
    😄😄
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    Elevated liver enzymes/Vertex meds

    Hello Friends!
    I have a few questions for those of you who have taken the Vertex modulators and experienced elevated liver enzymes. How elevated did your numbers become? Did your doctor take...
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    Anyone at the 2018 Conference?

    Hello CF friends,
    I was wondering if anyone is attending the CF Conference this year? Any news to share? We are especially interested in CFTR modulators, but any interesting news would be...
  4. Thanks for posting this! I hope I can find a...

    Thanks for posting this!
    I hope I can find a trial for my daughter. :)
    Even if I canít ...this info does give me some hope!
    I appreciate your expertise and knowledge.
    Thanks again,
    Michelle
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    Guardedly EXCITED??!

    https://www.cff.org/News/News-Archive/2018/FDA-Approves-New-CFTR-Modulator-Treatment-for-Cystic-Fibrosis/
    Does this mean what I think it means?
    That some heterozygotes can try the new triple...
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    Billy, Thank you so much for your...

    Billy,
    Thank you so much for your encouraging reply. It feels like every day since her diagnosis I've lived in fear of losing her, and now...some days...I can have some hope for more time. ...
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    Thank you ...I’m so glad you responded! It gives...

    Thank you ...I’m so glad you responded! It gives me some hope that you are doing well. I really need to believe there is hope for my daughter and her future.
    Thanks again!
    Michelle
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    I was desperate to get my daughter onto one of...

    I was desperate to get my daughter onto one of those clinical trials. I was not successful.
    I’d love to know how you are doing. Are you a heterozygous DF508? You can private message me if you...
  9. Replies
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    My daughter was 18 months old when her CF doctor...

    My daughter was 18 months old when her CF doctor suggested a feeding tube. I was reluctant at first, and cried a lot about it to be honest. Eventually he talked me into it. She was tiny...he said she...
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    Hi friend, NTM Is Non-Tuberculosis...

    Hi friend,
    NTM Is Non-Tuberculosis Mycobacterium. My daughter has this in her cultures too, and it's hard to treat. There are wonderful threads on this forum about it....including one I...
  11. I am curious about answers to this as well. We...

    I am curious about answers to this as well. We would love to have our daughter closer to National Jewish so she can get seen there full time. Right now that may mean trying to get her into a college...
  12. Thank you for posting this great news!! Is this...

    Thank you for posting this great news!! Is this for the remaining residual function mutations? I am hopeful that these modulators move forward for everyone they can help...
    Does this mean they would...
  13. Thread: Osteoporosis

    by ToriMom
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    1,601

    Hello Jshet, How awful for you and your...

    Hello Jshet,
    How awful for you and your son! I'm sorry to hear he is in such an awful situation. My son (also Autistic) would be very upset if he were in pain like this. I briefly looked up...
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    Hi there! May I ask--why did you start using...

    Hi there!
    May I ask--why did you start using the altera system for Colistin? Do you find that it is more effective this way? Does it clog up your device? Colistin is so sticky! We use Colistin...
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    May Frank Rest In Peace and be reunited with his...

    May Frank Rest In Peace and be reunited with his beautiful little girl. I saw this movie YEARS before I had my children...and then read the book after having Victoria. He was a wonderful writer and...
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    Wow! I'm inspired by the personal stories on...

    Wow!
    I'm inspired by the personal stories on this thread...especially those who managed to keep their jobs (or school or families) going through the treatment. Thanks for continuing to read our...
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    How is your son feeling? Any improvements? How is...

    How is your son feeling? Any improvements? How is he adjusting to the Tobi?
    Michelle
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    I am sorry to hear your son is not well. Is this...

    I am sorry to hear your son is not well. Is this his first PICC? Remind me how old he is...also, do you know how they will place it...conscious or unconscious sedation?
    I just want to send...
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    I want to thank everyone who has responded to me....

    I want to thank everyone who has responded to me. I really needed to hear some personal stories from other CF patients. Thank you for taking the time to write. So far I've called the infectious...
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    Mycobacterium Abscessus

    Hello Friends!
    Well...we have gotten some bad news today. My sixteen-year-old daughter is now culturing Myco Abscessus. I am actually not that surprised about it given her recent months of...
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    I want to send my encouragement your way as well....

    I want to send my encouragement your way as well. My Autistic (now 20, no CF) son has an awful time whenever he gets a cough. It really bothers him, and I cannot imagine him being my CF child with...
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    Hello Jeana Lynn, My daughter (now 16) has...

    Hello Jeana Lynn,
    My daughter (now 16) has had a lot of issues with hemoptysis. I was at my wits end about a year ago when I read something about birth control pills helping some CF females...
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    Imogene--wow and super WOW--I think it's...

    Imogene--wow and super WOW--I think it's incredible that you have these connnections with medical personnel and pharmaceutical companies. Thank you so much for putting my concerns out there so the...
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    I do believe it is a CF-related phenomenon. My...

    I do believe it is a CF-related phenomenon. My daughter sweats a lot during sleep. Since infancy her head was soaked in sweat and her pajamas were all wet in the morning. When I nursed her as a baby...
  25. HI Jade! I want to reply to your question...

    HI Jade!
    I want to reply to your question because I see this thread is a little "older" so the traffic is less lately. I use 2-3 drops of oil on my daughter's feet. Cinnamon bark or Cassia is a...
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