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  • HaleySwanson's Avatar
    Today, 12:41 PM
    I'm Haley I'm 21 years old Happily Engaged Mommy to a Cf free,beautiful,three month old little girl and a furbaby. From Ontario Canada My...
    751 replies | 181005 view(s)
  • emudge3's Avatar
    Today, 12:24 PM
    Hello! My daughter carries the DeltaF508 and 5T, (a variant) she is not diagnosed with the disease but with her combo, its a variant of the...
    0 replies | 8 view(s)
  • carolinen's Avatar
    09-22-2017, 02:28 PM
    carolinen replied to a thread Newly Cultured NTM/MAC in Adults
    So sorry you have had this diagnosis - but at least you now know why you feel so bad, and can start making a plan with your doctors to treat it....
    2 replies | 636 view(s)
  • jcwise62's Avatar
    09-22-2017, 02:19 PM
    jcwise62 replied to a thread Sauna and CF in Adults
    My son, a senior in HS this year and varsity football player, takes a salt tablet every day before he heads off for practice and one at night before...
    5 replies | 660 view(s)
  • Bwiles's Avatar
    09-22-2017, 01:44 PM
    Bwiles replied to a thread feeding tubes in Nutrition
    Hi Jillybeans, My 23 y/o daughter just got a feeding tube. Like others, we fought the idea of doing this for several years. She is now looking at...
    2 replies | 176 view(s)
  • tharris's Avatar
    09-22-2017, 01:27 PM
    tharris replied to a thread feeding tubes in Nutrition
    Hello jillybeans. I feel your devastation. My son, (20 years old 6' tall - 145 pounds) also 'off the charts' (in the wrong direction). We fought...
    2 replies | 176 view(s)
  • Ratatosk's Avatar
    09-22-2017, 01:26 PM
    I agree. I used the talking points from the CFF letter, added individual info and tada, two faxes sent. Especially easy to use the voice to text...
    4 replies | 364 view(s)
  • Ratatosk's Avatar
    09-22-2017, 01:22 PM
    Ratatosk replied to a thread Sauna and CF in Adults
    With DS, his doctor was never concerned with salt intake as long as he also had plenty to drink. His daycare kept the kids very active -- they...
    5 replies | 660 view(s)
  • triples15's Avatar
    09-22-2017, 09:58 AM
    Holy cow Ratatosk, that.was.awesome!!! Thanks so much for posting it. Within a couple minutes they had faxed my letter to both of my...
    4 replies | 364 view(s)
  • stylecomfy's Avatar
    09-22-2017, 09:09 AM
    stylecomfy replied to a thread Sauna and CF in Adults
    Thanks for the input. I was wondering about a more exact guideline for salt replacement in CF? What do your clinics commonly tell you? I've generally...
    5 replies | 660 view(s)
  • Ratatosk's Avatar
    09-21-2017, 11:04 AM
    Friends, text RESIST to 50409 to send a letter to your representatives. This is a free and legitimate service that will send a letter to your...
    4 replies | 364 view(s)
  • jillybeans's Avatar
    09-21-2017, 06:03 AM
    jillybeans started a thread feeding tubes in Nutrition
    What experience does anyone have with feeding tubes? My 15 year old newly diagnosed son cannot gain weight despite all of our best efforts. The...
    2 replies | 176 view(s)
  • veggiebin's Avatar
    09-20-2017, 10:41 AM
    veggiebin replied to a thread Don't have allergies? in Adults
    This thread is over ten years old, but I find it very interesting. I would like some updated information from people. My 19 yo daughter has...
    51 replies | 1267 view(s)
  • rebecca02's Avatar
    09-20-2017, 12:36 AM
    Coconut oil is much more like the holy grail. It repairs hair damage and breakage, helps to prevent hair fall and helps hair growing. Thanks to its...
    50 replies | 9108 view(s)
  • Ratatosk's Avatar
    09-19-2017, 04:12 PM
    Ratatosk replied to a thread Sauna and CF in Adults
    Definitely sounds like dehydration. I know some athletes take Salt Tablets --- I order the Salt Stick brand for my husband & cousin (No CF) during...
    5 replies | 660 view(s)
  • Golubicc's Avatar
    09-19-2017, 03:16 PM
    Golubicc replied to a thread Sauna and CF in Adults
    I would think with headache you are definitely dehydrated. Be careful.
    5 replies | 660 view(s)
  • stylecomfy's Avatar
    09-19-2017, 12:31 PM
    stylecomfy started a thread Sauna and CF in Adults
    Hi all, anyone with Sauna-ing experience? I recently started looking into Saunas for overall health benefits, such as improved circulation,...
    5 replies | 660 view(s)
  • Ratatosk's Avatar
    09-19-2017, 11:02 AM
    Got the following phone script to use from our CFF Rep. Graham-Cassidy Bill Phone Script Call (202)517-8215 Hello, my name is and I...
    4 replies | 364 view(s)
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