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  1. Replies
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    My mutations are Delta F08 and V562i with...

    My mutations are Delta F08 and V562i with Variants 5T & 12T. I am 79 years of age. If she has not a COMPLETE CYSTIC FIBROSIS SEQUENCING, I would suggest that you request this of her CF Specialist.
  2. Poll: I am 79 years old with CF. I was dx at age 47. ...

    I am 79 years old with CF. I was dx at age 47. I won't waste your time, I believe that you could have CF. You need to be seen at an APPROVED CYSTIC FIBROSIS CLINIC by a CF SPECIALIST. If you live...
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    My understanding is different. There are almost...

    My understanding is different. There are almost 2000 known mutations. New born screens for the most common 32. As you need additional screenings, your insurance will first allow 250 then 500, etc....
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    Newborn screening in most states is for ONLY 32...

    Newborn screening in most states is for ONLY 32 mutations. There are almost 2000 mutations (all on the same gene). You need an appointment at an APPOVED CYSTIC FIBROSIS CLINIC with a CF SPECIALIST.
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    Meggy, It is one thing to go to an approved CF...

    Meggy,

    It is one thing to go to an approved CF Clinic but you also need to see a CF specialist at that clinic. For example, Massachusetts General Hospital has more than 3000 Doctors but less...
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    Go to a CF CLINIC!!!!

    Go to a CF CLINIC!!!!
  7. Replies
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    5,920

    If and when you have a problem, contact legal at...

    If and when you have a problem, contact legal at cff.org
  8. Replies
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    Yes, I use Advantage. I have a plan (expensive)...

    Yes, I use Advantage. I have a plan (expensive) that pays all of my co-pays for Medicare A & B. I have been averaging 3 hospitalizations per year and the Advantage plan pays everything that...
  9. Thread: Hello

    by Printer
    Replies
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    You will adjust to CF and the new meds. I was dx...

    You will adjust to CF and the new meds. I was dx at age 47, in January I will be 79.
  10. Poll: You are showing more than enough symptoms to...

    You are showing more than enough symptoms to justify further screening. You need to be seen at an APPROVED CYSTIC FIBROSIS CLINIC by a CYSTIC FIBROSIS SPECIALIST. I was 47 when I was diagnosed. ...
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    During the Open Enrollment period, call the...

    During the Open Enrollment period, call the company that you have selected and sign up. They will do the rest.
  12. Replies
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    1,585

    During the open enrollment period, call the...

    During the open enrollment period, call the company that you have selected. Sign up. They will do the rest.
  13. Replies
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    You are not alone, there are many of us older CF...

    You are not alone, there are many of us older CF patients. There is a woman in Calif who was dx in her late 80s and is now 94. I was dx at age 47. You need to be seen at an APPROVED CYSTIC...
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    It certainly seems like something that needs to...

    It certainly seems like something that needs to be checked out. Her Doctor suspects CF but what is he/her doing to find a proper Dx. Your daughter needs to be seen at an APPROVED CYSTIC FIBROSIS...
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    I would have him retested but only at an APPROVED...

    I would have him retested but only at an APPROVED CF CLINIC by a CF SPECIALIST.
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    God bless you Ken. You are a trailblazer

    God bless you Ken. You are a trailblazer
  17. Replies
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    Ken: I'm so very glad that you are doing well....

    Ken:

    I'm so very glad that you are doing well.

    Bill
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    Follow this link for APPROVED CF CLINICS. ...

    Follow this link for APPROVED CF CLINICS. www.cff.org Good luck
  19. Replies
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    All CF patients produce and swallow mucus. The...

    All CF patients produce and swallow mucus. The mucus mixes with food in the digestive process. Mucus is a sticky substance and will, with digested (stool) food, stick to the walls of the colon. ...
  20. Sorry Call your CF Doctor

    Sorry Call your CF Doctor
  21. Call your CD Doctor

    Call your CD Doctor
  22. Replies
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    NO CF son; I was not "late onset". I had...

    NO CF son; I was not "late onset". I had symptoms (that I am aware of) at age 3. I had symptoms right up to my dx, including 2 surgeries that would be CF RELATED NOW.

    We are born with CYSTIC...
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    Courtney & G-Star: I have Delta F508 and...

    Courtney & G-Star:

    I have Delta F508 and V562I. V562I is a mild and rare mutation, only found in seven families in Northern Ireland. January 19 is my birthday and I will be 78. I have 2 college...
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    Stella: I was diagnosed at age 47 so being dx at...

    Stella: I was diagnosed at age 47 so being dx at their ages and without symptoms is really a good thing.
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    It sounds to me that you need a FULL CYSYIC...

    It sounds to me that you need a FULL CYSYIC FIBROSIS SEQUENCING. This is a simple blood draw that will identify every known CF mutation. Have your Doctor refer you to an APPROVED CYSTIC FIBROSIC...
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