• Hi Bailey, I was saddened to read about your cousin who took his life due to deafness. My brother’s death was also very sad. I won’t elaborate on the details, but I will say this, Roddy was a very upbeat, friendly and social person. However, he did have many health issues besides his deafness.
    As for salt. Kelly has never added salt to her food, not even popcorn. About the only salty snack she likes is pretzels. Around Halloween season she will buy pumpkins and roast the seeds (she absolutely adores pumpkin seeds). But if you want salt on them, you have to put it on yourself. Maybe it’s because she has so much salt in her system, she really doesn’t need it on her food. When she was first diagnosed with CF, the doctor thought she had an added condition called Barter’s Syndrome (I think that’s what he called it, or maybe it was Barton’s Syndrome) because she had such a high level of salt register on her sweat chloride test. Thankfully she didn’t have the other condition, upon further testing. The days before she was diagnosed were late June/early July, and quite hot. Kelly would sweat profusely and patches of salt formed on her forehead. She was five months old. I was perplexed. I had no idea what they were till I was told by hospital staff. I was dumbfounded. If there was a newborn screening for CF back then, we could have started treatment from day one, and saved Kelly months of misery. I’m so glad they routinely screen newborns for CF now. Were your babies automatically screened when they were born? Kelly’s baby sister was administered the sweat test at birth. Then when she was three months old they tested her stool. Good news…no CF!! Kelly was my one in four.

    • Ah that’s amazing! I am my Mom’s one in five (I’m the youngest), which I know is not always the case in a lot of family’s (like Jenny’s), who have multiple siblings with CF.

      My girls were not actually screened at birth, because I was diagnosed so late in life (mid 20s) but was a young Mom (19), so we didn’t know we needed to look when we should have looked. We knew I was sick of course, but not what to chase.

      However, my eldest was screened by the time she was like 1, because she looked so “classic CF” (she had a swollen belly, hard time keeping weight on, very sick looking), and my youngest has been watched on and off throughout the years since she can be a really mucus-y kid and has stomach troubles. They both had some worrisome traits, but it got better with age (versus me, which is the opposite). They’re also both DNA celiacs, but thankfully have passed all sweat tests!

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