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Today, 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? ...

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32 replies | 9085 view(s)
Today, 03:02 AM

wondcadi started a thread https://www.healthylifetimesupplement.com/keto-advance/ in Adults

Keto Advance :- Most natural item is excessively high in carbs. That infers you can't just chasm on regular item like you can on for the most part...

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0 replies | 5 view(s)
12-11-2018, 01:59 PM

meredithj replied to a thread CF Clinic and Doctor in Gainesville, FL in Adults

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...

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1 replies | 492 view(s)
12-10-2018, 11:32 AM

Imogene started a thread Aridis Pharma: Convenient anti biotics dosing for CF patients! in Adults

Aridis is a late-stage biopharmaceutical company focused on discovering and developing innovative anti-infectives, such as targeted immunotherapies...

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0 replies | 263 view(s)
12-10-2018, 11:11 AM

Blairb1322 started a thread C.2657+5g>a and p.thr164ala Varient of uncertain significance in DNA and Mutations

Can anyone explain what this means? We go for a sweat test on December 26 but I am worried :(

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0 replies | 348 view(s)
12-08-2018, 09:51 AM

Ratatosk replied to a thread Mobilaire 50 PSI compressor in Families

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...

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10 replies | 1156 view(s)
12-06-2018, 03:53 PM

LittleLab4CF replied to a thread Q+A Adult with CF in Teenagers and Young People

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%...

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3 replies | 3618 view(s)
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...

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1 replies | 137 view(s)
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...

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1 replies | 137 view(s)
12-03-2018, 04:55 PM

kenna2 replied to a thread Q+A Adult with CF in Teenagers and Young People

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.

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3 replies | 3618 view(s)
12-03-2018, 03:40 PM

alcaesar replied to a thread Q+A Adult with CF in Teenagers and Young People

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...

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3 replies | 3618 view(s)
12-03-2018, 08:33 AM

blackchameleon started a thread Sons of men with CF through ICSI in Adults

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...

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0 replies | 988 view(s)
12-03-2018, 06:02 AM

Gammaw replied to a thread Mobilaire 50 PSI compressor in Families

I have the Precision Medical Easy Aire which is a 50 psi and it’s a workhorse. I’ve had it for several years now without any problem. I’ve never...

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10 replies | 1156 view(s)
12-02-2018, 11:04 PM

Ratatosk replied to a thread Mobilaire 50 PSI compressor in Families

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

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10 replies | 1156 view(s)
11-29-2018, 11:01 AM

jricci started a thread Phase 3 results for VX-659 triple combo in Adults

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...

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0 replies | 1187 view(s)
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,...

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0 replies | 395 view(s)
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...

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32 replies | 9085 view(s)
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...

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32 replies | 9085 view(s)
11-27-2018, 11:03 AM

iceskater7 replied to a thread P. Aerginosa Infection - Forehead Sinuses in Asthma, Allergies and Green

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...

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13 replies | 6248 view(s)
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...

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32 replies | 9085 view(s)
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 ???...

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32 replies | 9085 view(s)
11-26-2018, 12:08 PM

ToriMom started a thread Elevated liver enzymes/Vertex meds in Adults

Hello Friends! I have a few questions for those of you who have taken the Vertex modulators and experienced elevated liver enzymes. How...

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0 replies | 522 view(s)
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?

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32 replies | 9085 view(s)
11-24-2018, 07:17 AM

Imogene replied to a thread Five Feet Apart CF Movie!! in Families

Stella Grant (Haley Lu Richardson) is every bit a seventeen-year-old: she’s attached to her laptop and loves her best friends. But unlike most ...

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3 replies | 2172 view(s)
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

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1 replies | 808 view(s)
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...

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762 replies | 215897 view(s)