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http://medicalxpress.com/news/2013-08-additional-genetic-errors-cystic-fibrosis.html Can someone help explain what this article means? Does this mean that of the 1900 mutations known in the CFTR gene before only 22 were thought to be disease causing and now 127 are thought to be disease...

Is it possible you also have an inner ear infection?

When I don't have a microwave to boil water I have a collapsible goal meant for camping and a plug in metal coil that I place in the bowl with water. It takes about 4 minutes to boil and I use this water in my sinus rinse bottle after it cools. I use bottled water if available to decrease how...

I would ask for the zambey amplified plus deletions and duplications. On the Ambry website they explain the different CFTR tests that they offer.

diagnosed 35 now 37 I was diagnosed at 35 because my kids were tested and each had one genetic mutation for CF. My doctor put this with my chronic cough, pneumonia's, sinus infections and tested me. I gave each one genetic mutation. I feel so much better after treatment. As for how I...

This neb looks like a great idea, but the pamphlet I found online says it is meant for only 7 days of continuous use then dispose of it. Sorry I can't figure out how to attach the website. I just googled it. Maybe your doctor could order you enough and justify it with your insurance to use...

Congratulations on your baby. I'm 37 and wasn't diagnosed with CF until 35 and then only because my kids were being tested. I'm relatively healthy, married, have 2 kids, a master degree and I'm living life to its fullest. There are many people on here older then me. As for your ups and...

Congratulations on your daughter. A normal sweat test is under 30. 30 to 59 is considered borderline, and 60 and up positive. There are a few reasons for false positive sweat test. The Ambry genetic test that was ordered was the most comprehensive and exactly the right next step. For the...

We have an Omron Micro-air with the vibrating mesh technology from before Cf diagnosis and my CF team said not to use it because it cannot be sterilized. My daughter and I each have Pari Trek and use disposible nebs on vacation.

I love to drink salt water. Maybe a cup with a soft spout and juice with salt. I wouldn't mix the enzymes and salt so he doesn't not want the enzymes. Maybe baby sweat potatoes with salt.

Yes, sweat test numbers can vary. I don't know how much, but a friend of mine was trying to conceive the same time my daughter's and I were being tested for CF. The ovulation test kit my friend was using used a change in salt in the sweat to determine when she was ovulating. I read on a few...

I agree with LittleLab4CF, Treat the symptoms. Your son already has a stuffy nose. Is he in daycare? Does anyone around him have a cold? A sure sign my daughter and my allergists were wrong that our stuffy noses were allergies is when we are stuffy. We start our worst conjestion around...

I would ask for a written copy of the genetics report. Then you can look at cftr2 which is a database organized by John Hopkins and has great understandable information. Also if your husband gets tested you can learn if your child's mutation and abnormal gene are really two different genes...

Sent you a PM.

Has anyone tried the Acapella Duet? I am looking for a PEP device for when I travel. I have used the Acapella choice, but thought the Acapella Duet seemed like a better option. The Duet has a port for the nebulizer cup to be attached. Any other recommendations for a PEP device for travel...

I had trouble putting on weight as a child. Now my thyroid is a mess and I easily put on weight. As for being asked if she is pregnant, is you daughter bloated? My CF dietitian recommended I try a gluten free diet to help with bloating. The more strict I am about the gluten free diet the...

I was a late diagnosis too age 35. I understand the girgling at night. I was diagnosed with sleep apnea prior to my CF testing and diagnosis. My CF pulmonologist explained that I snore when I breathe out verses when I breathe in. He said obstructive sleep apnea from, for example, a large...

The benefit would be unemployment checks. Also if you are fired for wrong reasons, then the benefit would be a lawsuit. I have struggled with since I was just diagnosed a year. I have not told my boss. I have a new boss who has only known me the last year my health was struggling. In my job...

thanks for the reply

I don't have an answer, but have been feeling the same way. For me my lungs are tight when I first wake up in the morning until I vest with a hypersal neb. Steps and fast walking are making me short of breath. My doctor suggested I try using a mask with my hypertonic saline neb. He thinks I...