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Hello, my son has V520F & 17 17 ig<a.... I was told that this is a class 3 mutation, with pancreatic insufficiency characteristics... Which doesn't make sense for my son, because he has always been able to keep weight on.. He is more asthmatic... He is 16 and pretty healthy overall, on...

Medical Marijuana, is just that medicine. I is known to be a great help for people with CF, if my son starts having any issues, I would rather him take, eat , ect (not smoke) marijuana, then any of the meds you mentioned.. ( Paxil, Prozac, Xanax and Klonopin) Marijuana, could probably replace...

We got a Mini Pincher, he immediatly took to my son , who is 15 w/ CF. We call him his medneb buddy... No matter what's going on, when my son does a medneb (neb treatment) Mo MO (mini pin) has to be in his lap.... it is the cutest thing... so I do think he is a therapy dog..litterally....

Here is what I know... I am in California... DO NOT DISCLOSE! What you want to do and I know from experience, is once you have worked at any location, for over 6 mnths to a year, look into the companies HHR for specific time, but you want to apply for FMLA, thrgh your employer. Do this in...

Hello, I am trying to get my son in this study and we are in the process of ordering medical records and signing consent forms. I am wondering if anyone has been in this study? These are the mutations that are included in this study: A Pilot Study Testing the Effect of Ivacaftor on Lung...

Hey guys thx for all the info.. I too have contacted Connie via voicemail and email. She replied to me via email and stated the same thing ... It will be ongoing for recruitment for 6 months and that she will get back to me with further info! I went a little further with it and decided to email...

Hello my son is 14 and he has V520F & 1717>a>g... So far I have researched the V520F is a class 3 mutation. As far as I can tell, Kalydeco will be able to work on it..after the clinical trials (3rd phase) are finished this year... I am hopeful!

I would not recommend Loma Linda University in San Berdino , California.. They are not RXing it to anyone! I am beyond frustrated!

I would not recommend Loma Linda University in San Berdino , California.. They are not RXing it to anyone! I am beyond frustrated!

:-) CONGRATS TO YOU ! So happy to hear you are doing well... and Thank you for leading the way!

:-) CONGRATS TO YOU ! So happy to hear you are doing well... and Thank you for leading the way!

I have thought for some time that carriers may have some symptoms... My daughter is a carrier and she has always had serious digestion issues. I am a carrier (obviously lol) and I too have always suffered with stomache issues, especially after any kind of greasy foods. They have labeled anything...

I have thought for some time that carriers may have some symptoms... My daughter is a carrier and she has always had serious digestion issues. I am a carrier (obviously lol) and I too have always suffered with stomache issues, especially after any kind of greasy foods. They have labeled anything...

Im not sure if my son's enzymes are regular or not.. What is the norm?? He has no problem gaining weight, he eats lots of fatty foods, almost 4-5 full meals a day and lots of snacks. I can't remember him, not being hungry. He only takes 2 Creon 24's with meals and none with snacks. He is more...

Im not sure if my son's enzymes are regular or not.. What is the norm?? He has no problem gaining weight, he eats lots of fatty foods, almost 4-5 full meals a day and lots of snacks. I can't remember him, not being hungry. He only takes 2 Creon 24's with meals and none with snacks. He is more...

Hi Steve, Thanks for all your help on here. I am trying to get clarification and I am getting conflicting answers. V520F? Class 3 mutation? I know my sons other 17 171g>a is a classic cf, class 1, but they have changed the other mutations's class a couple times. Can you clarify for me? Thanks...

My son just started the 7% 4 days ago and so far he has been able to produce alot of plugs.. I have read that using a mask may help with dryness and scratchy feeling, but it is mild for him. So far so good. Hope it keeps the mucus flowing!!

My son just started the 7% 4 days ago and so far he has been able to produce alot of plugs.. I have read that using a mask may help with dryness and scratchy feeling, but it is mild for him. So far so good. Hope it keeps the mucus flowing!!

Hello, my son is 9 and he has cf. He was cultured last month and today they told us that he has mersa. They aslo told me that it will not harm him unless it starts to grow more, but they wouldn't give me any specifics....They also told me that is is there policy that once you get MERSA then you...

Hello, my son is 9 and he has cf. He was cultured last month and today they told us that he has mersa. They aslo told me that it will not harm him unless it starts to grow more, but they wouldn't give me any specifics....They also told me that is is there policy that once you get MERSA then you...