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  • Rebjane's Avatar
    10-14-2018, 07:36 AM
    Wondering about recommendations for paints that will not irritate CF lung? My daughter has a strong artistic streak(very therapeutic and relaxing...
    5 replies | 1028 view(s)
  • meredithj's Avatar
    10-18-2018, 01:46 PM
    Hi everyone - I am reaching out since it seems like resources for adults being diagnosed seem few and far between. I am 36 years old and just...
    4 replies | 697 view(s)
  • threebabies's Avatar
    10-15-2018, 04:29 PM
    threebabies started a thread Class trip in Families
    Hi my twin boys (both cfers) are supposed to be going on a class trip to Howe Cavern in Upstate New York. The caves are about 100 feet underground. I...
    3 replies | 793 view(s)
  • lollygotadverbs's Avatar
    11-06-2018, 01:02 AM
    Hi everyone! So, lately I've been dealing with a few troubling symptoms. Extreme shortness of breath, particularly when I exercise. My whole life...
    4 replies | 562 view(s)
  • kenna2's Avatar
    11-01-2018, 10:59 AM
    For those of you who don't know March 22, 2019 in theaters EVERYWHERE there is a movie called Five Feet Apart that is about a friendship between two...
    2 replies | 915 view(s)
  • benthyr123's Avatar
    11-03-2018, 11:15 AM
    Does anyone have insight to changing plans? You seem to need a masters degree to navigate all the information. I have had original Medicare for at...
    4 replies | 644 view(s)
  • José Coelho's Avatar
    10-21-2018, 12:29 PM
    What is your opinion about acupuncture or chinese traditional medicine? Have you ever tried? Best Regards
    3 replies | 484 view(s)
  • gunelle's Avatar
    11-06-2018, 09:26 AM
    gunelle started a thread Drop in Fev1 in Adults
    Hi. I've had a drop in my lung function over the last months. I'm usually at 76-82%. But have gone down to 64% I don't feel worse over all. On the...
    3 replies | 367 view(s)
  • Imogene's Avatar
    10-22-2018, 01:20 PM
    New Enzymes for CF https://azurrx.com/index.php/investors/press-releases/2018/117- Phase 2 study to begin! Help for patients with chronic...
    0 replies | 824 view(s)
  • Ryarnell316's Avatar
    11-07-2018, 04:28 PM
    Ryarnell316 started a thread Hello in Adults
    My name is rhiannon i am 22 i was diagnosed with cystic fibrosis at 15 weeks when i was pregnant with my daughter. Its been a long journey. I go to a...
    2 replies | 377 view(s)
  • Mum03's Avatar
    11-09-2018, 02:51 PM
    Hi! I've been reading your posts for a while but this is my first post. I think I'm looking for reassurance. Two of my three children (2 and 10) had...
    3 replies | 267 view(s)
  • ToriMom's Avatar
    10-19-2018, 01:59 PM
    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...
    0 replies | 560 view(s)
  • jimcaldwell's Avatar
    11-02-2018, 01:17 AM
    jimcaldwell started a thread Wellness Protocol in Adults
    Sharktank Research Foundation has recently published a Wellness Protocol online, as an aid to help people with CF contemplate all options of care ...
    0 replies | 175 view(s)
  • stephen's Avatar
    11-11-2018, 04:18 PM
    stephen started a thread A Look Into the Future in Adults
    While advances like this are only dreams right now, hopefully they are not as far off as we may think. Let's Dream! "3D bioprinted lungs to be...
    0 replies | 163 view(s)
  • Imogene's Avatar
    Yesterday, 05:58 AM
    Imogene started a thread vertex drug price uk in Adults
    https://pharmaphorum.com/top-stories/vertex-told-to-reveal-cf-drug-price-as-mps-begin/?utm_source=pharmaphorum+Top+Stories&utm_campaign=a6a14f4bdb-EMA...
    0 replies | 158 view(s)
  • Imogene's Avatar
    11-02-2018, 09:48 AM
    https://pharmaphorum.com/news/vertex-european-approval-cystic-fibrosis/?utm_source=pharmaphorum+Daily+Newsletter&utm_campaign=d338668281-EMAIL_CAMPAIG...
    0 replies | 145 view(s)
  • Ryarnell316's Avatar
    11-07-2018, 04:25 PM
    Ryarnell316 started a thread Myself in Newly Diagnosed
    My name is rhiannon i am newly diagnosed with cystic fibrosis and i am 22 years old. Its not easy i wake up every day sick so bad i cant always...
    0 replies | 127 view(s)
  • jimcaldwell's Avatar
    11-11-2018, 07:03 PM
    I have a Hillrom Vest Model 104 with 197 hours of use, if someone needs one. It has an Adult Small vest included.
    0 replies | 48 view(s)
  • Paulo5656's Avatar
    Yesterday, 07:25 AM
    I'm all for suppliments , but when you have lauranell h burch saying not to use symdeco or pulmazyme but use her product, that's bang out of order....
    5 replies | 1466 view(s)
  • JustaCFmom's Avatar
    11-11-2018, 02:35 PM
    Hi Mom03, First, welcome! This site is full of helpful information and people. You are not alone! I have 3 kids with CF, now ages 14, 22 and...
    3 replies | 267 view(s)
  • Mum03's Avatar
    11-11-2018, 05:04 AM
    Thank you. We live in Bahrain and there's only only one CF clinic here.
    3 replies | 267 view(s)
  • Sophie’sFreckles's Avatar
    11-10-2018, 02:18 PM
    Hey Millie! My name is Sophie (I’m 15) and I’m looking for someone to talk to who also has CF. Reach out if you want my contact info. Hope you’re...
  • Printer's Avatar
    11-10-2018, 01:52 PM
    Yes, I use Advantage. I have a plan (expensive) that pays all of my co-pays for Medicare A & B. I have been averaging 3 hospitalizations per year...
    4 replies | 644 view(s)
  • Imogene's Avatar
    11-10-2018, 10:29 AM
    Leaving tomorrow! On a jet plane...carrying all your important surveys! More to come! Data turning to information you can RENT?!!!
    7 replies | 2883 view(s)
  • kenna2's Avatar
    11-09-2018, 04:19 PM
    It is possible to have CF and not have any tell tale signs for years. I was diagnosed at 7 and some people on this site have been diagnosed as...
    3 replies | 267 view(s)
  • Printer's Avatar
    11-08-2018, 04:30 PM
    Printer replied to a thread Hello in Adults
    You will adjust to CF and the new meds. I was dx at age 47, in January I will be 79.
    2 replies | 377 view(s)
  • Gammaw's Avatar
    11-08-2018, 11:28 AM
    Gammaw replied to a thread Hello in Adults
    Hi Ryarnell. Welcome. We’re glad you found us. You will find a wealth of information on our site and a large group of helpful people. Feel free to...
    2 replies | 377 view(s)
  • gunelle's Avatar
    11-07-2018, 11:09 AM
    gunelle replied to a thread Drop in Fev1 in Adults
    Thank you for replies. My doctor just told me that I have a mycobacteria. They are still studying it and will know the final results in one month. I...
    3 replies | 367 view(s)
  • LittleLab4CF's Avatar
    11-07-2018, 02:15 AM
    This question is not only thoughtful, it's a good model for most medical tests and procedures. I try to remember to ask if anything actionable could...
    4 replies | 562 view(s)
  • rubyroselee's Avatar
    11-06-2018, 07:37 PM
    rubyroselee replied to a thread Drop in Fev1 in Adults
    I typically run around 80%. One time I was 55%, but I really didn't feel bad. Turns out I was just exhausted from having two little kids. I found...
    3 replies | 367 view(s)
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