Cystic Fibrosis Forum (EXP)

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  1. A

    Not Diagnosed dF508 & R117H 7T/9T

    Hi, <br /> <br />My kids have the same two genes. We have an interesting road to diagnosis on both of them. Our daughter didn't show any symptoms until age 5, was misdiagnosed as "asthma" then correctly diagnosed at age 14. Her brother had no symptoms and we had him tested at age 18. For a while...
  2. A

    Diagnosis in progress

    My kids are 21 and 23 years old. They both have the same gene mutations as you. I know of a couple of other adults with the same mutations too. Generally speaking this combination usually results in no digestive issues and more mild lung symptoms for a longer period of time than others with CF...
  3. A

    Diagnosis in progress

    My kids are 21 and 23 years old. They both have the same gene mutations as you. I know of a couple of other adults with the same mutations too. Generally speaking this combination usually results in no digestive issues and more mild lung symptoms for a longer period of time than others with CF...
  4. A

    Diagnosis in progress

    My kids are 21 and 23 years old. They both have the same gene mutations as you. I know of a couple of other adults with the same mutations too. Generally speaking this combination usually results in no digestive issues and more mild lung symptoms for a longer period of time than others with CF...
  5. A

    Diagnosis in progress

    My kids are 21 and 23 years old. They both have the same gene mutations as you. I know of a couple of other adults with the same mutations too. Generally speaking this combination usually results in no digestive issues and more mild lung symptoms for a longer period of time than others with CF...
  6. A

    Diagnosis in progress

    My kids are 21 and 23 years old. They both have the same gene mutations as you. I know of a couple of other adults with the same mutations too. Generally speaking this combination usually results in no digestive issues and more mild lung symptoms for a longer period of time than others with CF...
  7. A

    Are there still unknown mutations?

    It's pretty likely that your "unknown" gene is now a known gene. If it were me, I'd see if your doctor will order genetic testing for you to find out both mutations. There are treatments (either out now, or coming down the pipeline) that will work on only specific gene types, so you have a valid...
  8. A

    Are there still unknown mutations?

    It's pretty likely that your "unknown" gene is now a known gene. If it were me, I'd see if your doctor will order genetic testing for you to find out both mutations. There are treatments (either out now, or coming down the pipeline) that will work on only specific gene types, so you have a valid...
  9. A

    Are there still unknown mutations?

    It's pretty likely that your "unknown" gene is now a known gene. If it were me, I'd see if your doctor will order genetic testing for you to find out both mutations. There are treatments (either out now, or coming down the pipeline) that will work on only specific gene types, so you have a valid...
  10. A

    Are there still unknown mutations?

    It's pretty likely that your "unknown" gene is now a known gene. If it were me, I'd see if your doctor will order genetic testing for you to find out both mutations. There are treatments (either out now, or coming down the pipeline) that will work on only specific gene types, so you have a valid...
  11. A

    Are there still unknown mutations?

    It's pretty likely that your "unknown" gene is now a known gene. If it were me, I'd see if your doctor will order genetic testing for you to find out both mutations. There are treatments (either out now, or coming down the pipeline) that will work on only specific gene types, so you have a valid...
  12. A

    Getting approval for the Vest

    I have not had Regence Blue Shield, but I think the key is persistance, and Hill-Rom is pretty good at following up on things. Just keep in touch with them and if it is denied they will deal with the appeal too.
  13. A

    Getting approval for the Vest

    I have not had Regence Blue Shield, but I think the key is persistance, and Hill-Rom is pretty good at following up on things. Just keep in touch with them and if it is denied they will deal with the appeal too.
  14. A

    Getting approval for the Vest

    I have not had Regence Blue Shield, but I think the key is persistance, and Hill-Rom is pretty good at following up on things. Just keep in touch with them and if it is denied they will deal with the appeal too.
  15. A

    Getting approval for the Vest

    I have not had Regence Blue Shield, but I think the key is persistance, and Hill-Rom is pretty good at following up on things. Just keep in touch with them and if it is denied they will deal with the appeal too.
  16. A

    Getting approval for the Vest

    I have not had Regence Blue Shield, but I think the key is persistance, and Hill-Rom is pretty good at following up on things. Just keep in touch with them and if it is denied they will deal with the appeal too.
  17. A

    Symbicort

    My son has been on Symbicort for over a year - all is well. He was switched from Advair because it immediately gave him thrush.
  18. A

    Symbicort

    My son has been on Symbicort for over a year - all is well. He was switched from Advair because it immediately gave him thrush.
  19. A

    Symbicort

    My son has been on Symbicort for over a year - all is well. He was switched from Advair because it immediately gave him thrush.
  20. A

    Symbicort

    My son has been on Symbicort for over a year - all is well. He was switched from Advair because it immediately gave him thrush.
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