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    9 years since borderline sweat & 1 gene mutation found. Retest??

    When I was diagnosed, two years before the gene was discovered, there was no genetic testing. The test base began at 32 mutations, a standard that remains in use today. The base has grown from 32 to nearly 3000 mutations. Over the years genetic testing has expanded therefore changed. It is...
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    Son is a CF carrier- Neither husband or I are?

    The first test for CF is for 32 mutations. The second test is for 250 mutations. There are SEVERAL tests before you get to the top of the ladder. At the top of the ladder is a FULL CYSTIC FIFROSIS SCREENING, it is here that they test for all known mutations approximately 3000.
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    Getting back to normal

    Are you suggesting that you have some hearing loss as a result of being on Trikafta?
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    Son is a CF carrier- Neither husband or I are?

    You (family) need to be seen by a CF Specialist at an APPROVED CYSTIC FIBROSIS CLINIC. Go to CFF.org for your nearest clinic
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    9 years since borderline sweat & 1 gene mutation found. Retest??

    She should be seen by a CF SPECIALIST at an APPROVED CF CLINIC.
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    Hi Mg930, how are you doing?

    Hi Mg930, how are you doing?
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    Acne increase on Trikafta

    Excellent.
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    Acne increase on Trikafta

    After being on TRIKAFTA for a few months, I had a red rash on my face and under my chin, I don't know if the two were related. I treated it with Hydrocortisone Valerate 0.2%. It cleared up in about five days.
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    Eyes Burning on Trikafta

    Age 80 dx at age 47. I have had cataract surgery in both eyes. I had the same burning. I scrub my eyes with baby shampoo when I am in the shower and use eye drops upon occasion. This has cleared it up.
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    I now have two children with CF, advice please

    Good for him and good for you.
  11. P

    I now have two children with CF, advice please

    Ratotosk: How old is your son and how is he doing now?
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    Thanking LITTLELAB4CF for thanking us!

    David, I often think of you, stay well.
  13. P

    I now have two children with CF, advice please

    I am not a parent but I am 80 years old and obviously I have lived with CF for all of my life. I was dx at age 47 so of course I went untreated for all of that time. My parents, like you, had 4 children but only spread out over less than 5 years, I was the oldest. All of my siblings are...
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    Vertex Patient Assistance Program

    Yes try CFF.org/ Compass
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    Working with COVID

    Stay out until you feel comfortable to go back.
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    Eyes Burning on Trikafta

    Call your Patient Support Specialist. I did and she said that nobody reported eye issues.
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    Eyes Burning on Trikafta

    I have 2 cataracts but my eyes burn.
  18. P

    Cayston

    I have a 23 day supply of Cayston with an exp date of 3/17.. If anyone wants it, PM me. Bill
  19. P

    Cayston

    I have a 23 day supply of Cayston with a exp date of 3/17. If anyone wants it send me a PM. Bill
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