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07-18-2019, 11:24 PM

ngoaihanganh posted a visitor message on ngoaihanganh's profile

https://myspace.com/tructiepvn thuc su la mot noi ly tuong cho chung ta thoa man dam me bong da cua minh. Duoc trau doi kien thuc ve bong da qua cac...

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07-18-2019, 09:20 AM

isabellastewart replied to a thread new moms with cf newborns in Families

Hello Erica, My daughter is 1 month old and she went through the newborn diagnosis. She has two mutations there we have started enzymes right away...

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13 replies | 2030 view(s)
07-16-2019, 03:24 PM

emason replied to a thread f508 and 5T - looking for CRMS experiences in DNA and Mutations

Hi! My son has a CRMS dx. He just turned 5. We are still pretty grey. He goes to clinic every 3 months and ENT every 6. He has some milder issues but...

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3 replies | 534 view(s)
07-16-2019, 01:34 PM

Printer replied to a thread f508 and 5T - looking for CRMS experiences in DNA and Mutations

My mutations are Delta F08 and V562i with Variants 5T & 12T. I am 79 years of age. If she has not a COMPLETE CYSTIC FIBROSIS SEQUENCING, I would...

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3 replies | 534 view(s)
07-16-2019, 10:31 AM

Ratatosk replied to a thread Is anyone on Bethkis? in Adults

DS was on Tobi and then two different generic forms of Tobramycin -- Teva was one of the companies, can't recall the other, but not Bethkis. Didn't...

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1 replies | 600 view(s)
07-16-2019, 01:40 AM

ann777 started a thread D110H Mutation in DNA and Mutations

Hello everyone! My daughter was diagnosed with CF- D110H and other very rare mutation of I class through prenatal screening. She has boarderline...

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0 replies | 86 view(s)
07-15-2019, 09:51 PM

findcure replied to a thread f508 and 5T - looking for CRMS experiences in DNA and Mutations

Sorry to hear the screening result. Your daughter has one copy of functioning CFTR, but the expression of this one copy is determined by another...

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3 replies | 534 view(s)
07-15-2019, 10:57 AM

tessamus started a thread Is anyone on Bethkis? in Adults

Hi everyone, I was curious if and who is on Bethkis (one generic form of Tobi). What your experiences are? Good, bad, if it is works for you?...

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1 replies | 600 view(s)
07-12-2019, 08:16 AM

Marvins replied to a thread Problems gaining muscle/strength (with CF) in Exercise & Fitness

Gains become harder and harder to make as time goes by. Don't forget that. It's not linear.

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1 replies | 1947 view(s)
07-11-2019, 01:52 PM

SkyA replied to a thread Airway Clearance while camping/road tripping in Airway Clearance Techniques

Thank you for the information! It's really helpful!

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3 replies | 340 view(s)
07-11-2019, 01:31 PM

MommyMarie started a thread f508 and 5T - looking for CRMS experiences in DNA and Mutations

Hi! My daughter is a year and a half and has the mutations df508 and 5T (we aren't sure her TG length as they don't test for it where we live). ...

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3 replies | 534 view(s)
07-09-2019, 08:45 AM

Ratatosk replied to a thread anyone culturing enterobacter cloacae in lungs? in Adults

My son cultured it when he was an infant and we're assuming he got it from the NICU or hospital. He developed a cough to the point he'd cough so...

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1 replies | 999 view(s)
07-08-2019, 08:47 PM

fel started a thread anyone culturing enterobacter cloacae in lungs? in Adults

I am a symptomatic CF carrier, not a full blown person with CF (both my children have it.) Anyway, last Nov. I cultured atypical pneumonia after...

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1 replies | 999 view(s)
07-08-2019, 08:33 PM

fel replied to a thread Adults with CF what are your jobs? in Adults

My older son is a data scientist (got an MS degree in Bioinformatics) If he has an exacerbation he can work from home. Younger son desires a less...

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12 replies | 7029 view(s)
07-08-2019, 01:58 PM

Ratatosk replied to a thread Airway Clearance while camping/road tripping in Airway Clearance Techniques

Years ago there was a blogger on this site who wrote about using a power inverter --- and having it hardwired to her car so she could vest and...

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3 replies | 340 view(s)
07-08-2019, 01:18 PM

scrapper1264 replied to a thread Airway Clearance while camping/road tripping in Airway Clearance Techniques

There are a few battery operated, ac/dc adapter nebulizers out there. They came in handy while traveling to Europe. We have never attempted to use...

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3 replies | 340 view(s)
07-07-2019, 04:06 PM

Imogene replied to a thread Micah lost 7-12-12 in Remembering

Thinking of you and your beautiful family. May these memories bless you! ...

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1 replies | 171 view(s)
07-07-2019, 12:09 AM

Sisofanangel started a thread Micah lost 7-12-12 in Remembering

For those who might remember, I am the oldest daughter of Tom and johanna. Micah’s older sister. With the anniversary coming up, and my mental health...

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1 replies | 171 view(s)