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  • 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...
    1 replies | 475 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 | 262 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 | 344 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 | 1156 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 | 3618 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 | 137 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 | 137 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 | 3618 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 | 3618 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 | 988 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 | 1156 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 | 1156 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 | 1185 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 | 395 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...
    31 replies | 9077 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...
    31 replies | 9077 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 | 6247 view(s)
  • Jeannie85's Avatar
    11-27-2018, 10:25 AM
    Jeannie85 replied to a thread F508 & d110h in DNA and Mutations
    My 5 year old daughter has d110h and delta508. She has been healthy other than kid stuff like colds due to being in school. Last year she had...
    31 replies | 9077 view(s)
  • igorko55's Avatar
    11-27-2018, 09:43 AM
    igorko55 replied to a thread F508 & d110h in DNA and Mutations
    Hello. I'm from Slovakia. I have a son, 1 year old. Has mutations D110H and deletion exons 4,5 and 6. Is there anyone who has this mutation D110H ???...
    31 replies | 9077 view(s)
  • ToriMom's Avatar
    11-26-2018, 12:08 PM
    Hello Friends! I have a few questions for those of you who have taken the Vertex modulators and experienced elevated liver enzymes. How...
    0 replies | 521 view(s)
  • Jeannie85's Avatar
    11-24-2018, 09:28 PM
    Jeannie85 replied to a thread F508 & d110h in DNA and Mutations
    I do not understand what you are asking. Could you try to rephrase it?
    31 replies | 9077 view(s)
  • Imogene's Avatar
    11-24-2018, 07:17 AM
    Stella Grant (Haley Lu Richardson) is every bit a seventeen-year-old: sheís attached to her laptop and loves her best friends. But unlike most ...
    3 replies | 2171 view(s)
  • Mum03's Avatar
    11-22-2018, 03:24 PM
    Mum03 replied to a thread Myself in Newly Diagnosed
    I hope you feel better soon. Now you've been diagnosed you might be able to get medicines to help some of the symptoms
    1 replies | 806 view(s)
  • fekreman's Avatar
    11-21-2018, 02:17 AM
    fekreman replied to a thread Who are you in a nut shell in Adults
    My name is Sara I'm a woman I live in italian I am a teacher I have a girl child I love my daughter I love road trips. i love myself I am...
    762 replies | 215893 view(s)
  • igorko55's Avatar
    11-20-2018, 03:40 PM
    igorko55 replied to a thread F508 & d110h in DNA and Mutations
    good day our son has skrining on cf mutation D110H and deletion xenon 4-6 also does not have any symptoms 1 year ago how do you handle the ake mate...
    31 replies | 9077 view(s)
  • igorko55's Avatar
    11-20-2018, 03:31 PM
    igorko55 replied to a thread F508 & d110h in DNA and Mutations
    good day we are from Slovakia and we have son of cf mutation D110H and deletion of xenon 4-6 ake mate or prognosis for this mutation son 1 year...
    31 replies | 9077 view(s)
  • Imogene's Avatar
    11-19-2018, 04:01 PM
    I am back from a very successful trip to Glasgow to speak at the conference on Blockchain for Clinical Trials. Lots of positive feedback. ...
    8 replies | 3701 view(s)
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