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  • ponimonq's Avatar
    Today, 07:55 AM
    Keto Tone Keto Tone Diet :-This upgrade uses each home developed settling and not used any mixture or fabricated substance . Regardless, here is...
    0 replies | 1 view(s)
  • threebabies's Avatar
    Today, 01:33 AM
    Hi my daughter is 11 years old and she had been having a really hard time over the past several months. She was hospitalized 2 times in 2 months. She...
    0 replies | 38 view(s)
  • stephen's Avatar
    Yesterday, 07:45 PM
    stephen replied to a thread symdeco in Adults
    mstein, I switched to Symdeko this past March, after taking Kalydeco for four years. When I started the Kalydeco, I too brought up loads of...
    3 replies | 145 view(s)
  • kenna2's Avatar
    Yesterday, 12:38 PM
    kenna2 replied to a thread symdeco in Adults
    I started out on Orkambi first then switched to Symdeko. If you're just started your first CF corrector med, you're going to go through a purging...
    3 replies | 145 view(s)
  • Ratatosk's Avatar
    Yesterday, 10:00 AM
    Ratatosk replied to a thread symdeco in Adults
    Were you on Orkambi before? Probably just "the purge", your body adjusting and trying to get all that junk up. Have you tried increasing vest/cpt...
    3 replies | 145 view(s)
  • mstein's Avatar
    12-17-2018, 09:10 PM
    mstein started a thread symdeco in Adults
    Is anyone taking symdeko for their CF I just started it and I am so congested and cant get my phlegm up. Any body have these side effects. This is...
    3 replies | 145 view(s)
  • Babs03's Avatar
    12-17-2018, 08:50 AM
    I’m glad you liked Dr. Lasano, that’s who my doctor in West Palm Beach recommended. I’m just waiting to get a referral from them so I can make an...
    2 replies | 678 view(s)
  • Dahlia's Avatar
    12-16-2018, 11:15 AM
    Hi! I am 28 years old and gave birth to my son 3.5 months ago. We do not have a newborn screening here. He is a rapid breather, I noticed it after a...
    0 replies | 136 view(s)
  • Amfirth's Avatar
    12-16-2018, 04:27 AM
    Hi all. Long story short...my husband has CF, a friend needed a place to stay so we offered her our spare room. We didn't think much of it at the...
    0 replies | 84 view(s)
  • LittleLab4CF's Avatar
    12-15-2018, 10:57 PM
    I have been waiting for some credible Public source to spell out the cautionary tale of the benefits and dangers of using a consumer genetic testing...
    1 replies | 257 view(s)
  • drminamoslemi's Avatar
    12-15-2018, 12:54 AM
    My name is mina. I am a female. I am 29 years of age. I live in Southern CA and I LOVE LOVE LOVE it. I was dx at three weeks due to failure to...
    763 replies | 216473 view(s)
  • Imogene's Avatar
    12-14-2018, 10:30 AM
    https://www.bloomberg.com/news/articles/2018-06-15/deleting-your-online-dna-data-is-brutally-difficult Companies who use your DNA should...
    1 replies | 257 view(s)
  • igorko55's Avatar
    12-14-2018, 04:23 AM
    igorko55 replied to a thread F508 & d110h in DNA and Mutations
    Has she mucus in the lungs? Or why she needs to use the vest? What is the prognosis of patients with the use of the medicinal product kalydeco? ...
    32 replies | 10324 view(s)
  • meredithj's Avatar
    12-11-2018, 01:59 PM
    I am newly diagnosed in Jacksonville. I have seen Dr. Lascano one time so far, but am going for my first 'real' visit in January. I really liked...
    2 replies | 678 view(s)
  • Imogene's Avatar
    12-10-2018, 11:32 AM
    Aridis is a late-stage biopharmaceutical company focused on discovering and developing innovative anti-infectives, such as targeted immunotherapies...
    0 replies | 316 view(s)
  • Blairb1322's Avatar
    12-10-2018, 11:11 AM
    Can anyone explain what this means? We go for a sweat test on December 26 but I am worried :(
    0 replies | 372 view(s)
  • Ratatosk's Avatar
    12-08-2018, 09:51 AM
    Ordered up a new one after the mobilaire took a dive off the end table. Came with a green "nipple" adapter for tubing, will probably cannibalize the...
    10 replies | 1369 view(s)
  • LittleLab4CF's Avatar
    12-06-2018, 03:53 PM
    The best advice I was given regarding employment helped me a lot. 1. Always be worth more to your employer, than he/she is to you. 2. Assume 100%...
    3 replies | 3828 view(s)
  • kenna2's Avatar
    12-05-2018, 04:25 PM
    kenna2 replied to a thread CRMS & Mucus in Families
    Not sure if you are doing this or know about this, but my ENT who sees a lot of CF patients, has us adding a drop of baby shampoo to our sinus...
    1 replies | 180 view(s)
  • slk317's Avatar
    12-05-2018, 12:28 PM
    slk317 started a thread CRMS & Mucus in Families
    My 15 yo son was diagnosed last year with CRMS. He sees the CF doctor twice a year, or more as needed. He seems to suffer the most in the winter, and...
    1 replies | 180 view(s)
  • kenna2's Avatar
    12-03-2018, 04:55 PM
    I know a lot of CFers have jobs where they can work from home or remotely. I don't know specifics, but I'm just sharing the knowledge I have.
    3 replies | 3828 view(s)
  • alcaesar's Avatar
    12-03-2018, 03:40 PM
    Hello, I am a 24 year old male living with CF and I have a question. I have been let go from jobs time and time again for lack of being able to...
    3 replies | 3828 view(s)
  • blackchameleon's Avatar
    12-03-2018, 08:33 AM
    G'day again everyone, it's been 8 years since i was in here seeking information regarding info of the possibility of infertility issues surrounding...
    0 replies | 1047 view(s)
  • Gammaw's Avatar
    12-03-2018, 06:02 AM
    I have the Precision Medical Easy Aire which is a 50 psi and itís a workhorse. Iíve had it for several years now without any problem. Iíve never...
    10 replies | 1369 view(s)
  • Ratatosk's Avatar
    12-02-2018, 11:04 PM
    Has anyone found a good replacement for the 50 psi compressor? Looked at the precision medical one online, but wasn't sure if it was compatible
    10 replies | 1369 view(s)
  • jricci's Avatar
    11-29-2018, 11:01 AM
    I'm guessing most have seen this already, but thought I'd share in case you missed it: Incredible Phase 3 results for VX-659!!!:) From Vertex...
    0 replies | 1265 view(s)
  • emason's Avatar
    11-28-2018, 12:33 PM
    emason started a thread Tracheal Tug in Families
    Hi everyone! I'm wondering if anyone has any ideas about this. My 4.5 year old has a CRMS dx (1 classic CF mutation, 1 rare variable mutation,...
    0 replies | 432 view(s)
  • Jeannie85's Avatar
    11-27-2018, 02:35 PM
    Jeannie85 replied to a thread F508 & d110h in DNA and Mutations
    She has never had an exacerbation. She has only be in antibiotic for ear infections. She plays and runs with the kids in her class without trouble...
    32 replies | 10324 view(s)
  • igorko55's Avatar
    11-27-2018, 11:48 AM
    igorko55 replied to a thread F508 & d110h in DNA and Mutations
    Thank you for your response. Our son has no symptoms. The salt test is 59 and 60, the pancreas functional. Unfortunately Kalydeco in Slovakia is not...
    32 replies | 10324 view(s)
  • iceskater7's Avatar
    11-27-2018, 11:03 AM
    This is incredible! I'm in the process of being evaluated for a late diagnosis of CF (I leave for the Mayo Clinic next week--fingers crossed!), but...
    13 replies | 6351 view(s)
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