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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 | 1160 view(s)
11-14-2018, 10:24 AM

Frace started a thread DIOS - any tips on how to get your bowels moving after a blockage? in Adults

My daughter has awful CF-related gut problems. She's getting over a blockage, but even the laxatives aren't getting things moving - just sitting...

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2 replies | 656 view(s)
11-17-2018, 05:18 AM

NatashaRonnie started a thread Diagnosed during pregnancy in Newly Diagnosed

Hello. My name is natasha, i am 23. I am currently 37 weeks pregnant and after having an amniocentesis late on due to the baby having bowl problems....

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1 replies | 785 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 | 959 view(s)
11-16-2018, 05:14 AM

LateTraveller7 started a thread Anyone with 1585-1G>A or 3140-26A>G? Uncommon variant in DNA and Mutations

Any one with 1585-1G>A (legacy code 1717-1G>A) and/or 3140-26A>G ( heterozygous) ? I am over 50yr old. CFer.

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0 replies | 568 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 | 511 view(s)
11-14-2018, 11:27 PM

Babs03 started a thread CF Clinic and Doctor in Gainesville, FL in Adults

For those of you that go to Gainesville CF Clinic, who is your doctor and do you like them? My doctor in West Palm recommended Dr. Jorge Lascano....

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1 replies | 295 view(s)
11-12-2018, 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...

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0 replies | 474 view(s)
11-11-2018, 07:03 PM

jimcaldwell started a thread Hillrom Vest free in Airway Clearance Techniques

I have a Hillrom Vest Model 104 with 197 hours of use, if someone needs one. It has an Adult Small vest included.

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0 replies | 397 view(s)
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...

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0 replies | 392 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 | 377 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 | 120 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 | 234 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 | 176 view(s)
Yesterday, 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 | 295 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 | 1116 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 | 3584 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 | 120 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 | 3584 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 | 3584 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 | 1116 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 | 1116 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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31 replies | 8870 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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31 replies | 8870 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 | 6215 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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31 replies | 8870 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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31 replies | 8870 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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31 replies | 8870 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 | 2147 view(s)