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  1. 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
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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
  7. 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. ...
  8. Sorry Call your CF Doctor

    Sorry Call your CF Doctor
  9. Call your CD Doctor

    Call your CD Doctor
  10. 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...
  14. I have 3 siblings, none have CF. I do however...

    I have 3 siblings, none have CF. I do however have had 3 cousins who have passes from CF and one living who has had a transplant.

    It should be important to you to know if you have CF or are even...
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    Livvy: Next week I will be 78. I have 2...

    Livvy:

    Next week I will be 78. I have 2 college degrees and I have been married for 55 years. Yesterday I chatted with a guy 57 who was dx at age 41. His mother tested positive at that thim...
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    I was diagnosed at age 47, 30 years ago. You are...

    I was diagnosed at age 47, 30 years ago. You are exactly where I was then. There are now almost 2000 known mutations and we know that you have tested positive for one of these. Cystic Fibrosis is...
  17. First, If your twins are not being seen at an...

    First, If your twins are not being seen at an APPROVED CYSTIC FIBROSIS CLINIC by a CYSTIC FIBROSIS SPECIALIST, you need to start there. Some, only a few, variants mimic CF. Tell me the name of the...
  18. If both you and your husband are carriers, there...

    If both you and your husband are carriers, there is only a 25% chance that a child that you produce will have CF. Yes this is normal. For a person to have CF, he/she would need to have 2 mutations,...
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    CF is NOT a death sentence. There is plenty of...

    CF is NOT a death sentence. There is plenty of time for a proper diagnosis. I'm 77 with CF.
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    F508 is the same as Delta F 508. There are...

    F508 is the same as Delta F 508.

    There are almost 2000 known mutations. Someone with CF has 2 mutations. 2000 X 2000 = 4,000,000 possible combinations of mutations. 3% may sound like a rare...
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    BSJ: CF is a very different disease. It...

    BSJ:

    CF is a very different disease. It requires 2 mutations, one from each parent. There are almost 2000 known mutations. This means that there are almost 4,000,000 "versions" of CF. As a...
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    The sweat test that is given outside of a CF...

    The sweat test that is given outside of a CF Center is only a "scanning sweat test". That is the reason that you were told that your CF Center will redo the test.
  23. rb: I cannot control the people that I come into...

    rb: I cannot control the people that I come into contact with each day but I can control my knowingly coming in contact with another CF Patient. You need to google, Burkholders Cepia (sp).
  24. I am 77 and my experience in dealing with...

    I am 77 and my experience in dealing with Medicare is if you need 14 days of IV's, you spend 14 days in the hospital. I would also suggest that you purchase the best Medicare Supplement plan that...
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    Call your CF Doctor. It is very likely nothing...

    Call your CF Doctor. It is very likely nothing but he/she should know about it.
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