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Wow! I can totally empathize! I actually did a sweat test and got 74 twice. I want to do a full genetic screening because they just found one mutation out of a panel of 13. I want to put my mind at rest. I have some very mild respiratory symptoms, not really CF. What are your symptoms? Hope...

Wild coincidence! I took the survey, but I'm not from the states, so I don't know if you wanted my answers.

Thanks so much for your thoughtful replies! I actually had a sweat result of 74 (2 times) so, while I don't have classical CF symptoms, there is something going on. I do have some minor respiratory issues They tested me for about 10 mutations and I have the 3849 +10 kb C>T mutation, which is...

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>marcob</b></i> Hi, There are also splicing mutations and frameshift mutations Thanks so much for the great explanation. My kids have W1282X the meaning of which I somehow managed to figure out (partly because it isn't so hard to...

I think they were all tested the same. 3 children have two mutations; 4 are carriers; and 3 have normal genes. The doctor said that 70 is the high end of normal? What is CRMS? What does it mean? I hear people say a carrier isn't effected, but then there is this CRMS claim. Huh? Very...

Understanding the Genetics- CORRECTION OOPS, I got mixed up. Her mutation is the 3849 +10 kb C>T , for what it's worth.

Hi! I am trying to understand why my daughter had such a high sweat test result of 71 and why carriers (or how carriers) are effected. She has 3 siblings with CF - W1282X, and 3649+10kb C>T which is the only reason she was tested. She is perfectly healthy. This result was a shock, the other...

Thanks so much for the link!!! (end) Thanks!!

Hi! I have 3 newly diagnosed kids with CF, ages 8, 16 and 20. My now 16 year old just suddenly started coughing out of the blue when she was 14. This went on for over a year until we got our diagnosis and went on to check the rest of the family. Her lung functions (FEV1) have gone from about 50...

Thanks for all your input. Our mutations are 3849+10kb C->T & W1282X. The first one is what makes the CF "mild". Thanks for your encouragement Melissa. I'll mention this to him. I went to a CF symposium yesterday organized through the CF foundation here. I got to see some of the statistics I...

Thanks for all your input. Our mutations are 3849+10kb C->T & W1282X. The first one is what makes the CF "mild". Thanks for your encouragement Melissa. I'll mention this to him. I went to a CF symposium yesterday organized through the CF foundation here. I got to see some of the statistics I...

Thanks Bill. Yes, this is all through a CF center in Israel. I was told by some that it is a "top CF clinic". It is a university hospital involved with research. Does that help it's status? The statistics here are all anonymous, so I don't actually know how they rate internationally. I have...

Thanks Bill. Yes, this is all through a CF center in Israel. I was told by some that it is a "top CF clinic". It is a university hospital involved with research. Does that help it's status? The statistics here are all anonymous, so I don't actually know how they rate internationally. I have...

The doctors say that azithromycin acts as an anti inflammatory in CF, as Liza mentions above. I would like to see him listening more to the doctors. I don't think inhaling hypertonic saline should make him feel weak. I don't know about Pulmozyme; and I know some people DO feel weak from...

The doctors say that azithromycin acts as an anti inflammatory in CF, as Liza mentions above. I would like to see him listening more to the doctors. I don't think inhaling hypertonic saline should make him feel weak. I don't know about Pulmozyme; and I know some people DO feel weak from...

Thanks for your input! He actually had a "mysterious" cough for quite a while a few years back and did go to a pulmonologist then. The doctor didn't hear anything and we never followed up because the cough cleared up when he started running. I forgot to ask if his culture had any bugs. His...

Thanks for your input! He actually had a "mysterious" cough for quite a while a few years back and did go to a pulmonologist then. The doctor didn't hear anything and we never followed up because the cough cleared up when he started running. I forgot to ask if his culture had any bugs. His...

Hi My newly diagnosed 20 yr. old started taking antibiotics/anti inflammatory meds and inhalation of hypertonic saline. He says it is making him weak and he wants to stop. The doctor says he isn't taking anything that should make him tired. His is VERY active and his FEV1 was 126. The clinic...

Hi My newly diagnosed 20 yr. old started taking antibiotics/anti inflammatory meds and inhalation of hypertonic saline. He says it is making him weak and he wants to stop. The doctor says he isn't taking anything that should make him tired. His is VERY active and his FEV1 was 126. The clinic...

Thanks for the feedback! I am in Israel and the company that sells the eflow is making a hefty profit. I call it extortion. The doctors say to get the eflow (it's officially OK. I think they won't recommend anything else - probably too much of a "limb") I got a microwave sterilizer and I LOVE...