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My sister-in law has just been diagnosed with C.F. at the age of 69!! How can this be possible? The only symptoms she has was a salty taste in her mouth and on her skin. What will happen to her and is there any treatment? Mary
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I only just saw this now, in July of 2017, but I want to thank you for posting this. I'm still hanging in there, but I have had to relocate away from my CF doc in Denver because I thought a lower elevation might help with breathing. (It didn't.)
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Has she had any problems with pancreatitis? Is she having any acute problems with her breathing?

Obviously, she should consult with a CF specialist, but having been diagnosed myself approximately 10 years ago in my 50s, I would guess she will probably have a normal life expectancy.

But, by all means, do NOT listen to me. Please make sure she contacts a CF specialist.

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Hello I'm sorry. My mother is 54 and going thru the same exact thing. I never in a million would think she's a burden. I have been questioning cf with her. She's always had some sort of gut issues as a kid along with respitory infection. When do you remember your tummy issues starting.
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Cystic fibrosis is something you are born with because it is a genetic disease. However as advancements have been made and more mutations have been identified adults who were previously thought to have things like asthma, COPD or gluten allergies are actually finding through genetic testing that they do have two CFTR mutations which means they do have cystic fibrosis. There is no cookie cutter format for someone with CF. Yes the type of mutations do play a role but so does the other genetic makeup in the individual as well as environmental factors so it is very possible for someone to Gold their whole life thinking they just have irritable bowel and have great lung function and never be diagnosed with CF. Not everybody who has cystic fibrosis suffers from lung issues.
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I want to say first. ...thank you. I am currently about to celebrate my 38 birthday and have just found out that my mother though she (a miracle according to her doctor) is a double carrier for the defective gene that causes cf. By this method I've found that I'm at the least a carrier from my mother's side. ..I've had many many medical issues from a young age. And I've been"diagnosed" with about 15 things going wrong with my body and always have. I've only just learned of my mother's genetic study. On one hand. ...I'm terrified. On the other. ..though not completely diagnosed on my end I'm grateful to have a better understanding of my life. I will change my diet and am already constantly doing at home physical therapy including posture correction. ..I've seen too many doctors in my life already and at this point. ...I won't risk a true diagnosis. It brings way too many restrictions and I've had enough of that from my own body. I'm not about to have any medical or governmental restrictions on me. I couldn't live like that and wouldn't want to. I have less than 5 years until my children are grown. ....Now. ..I worry about them.
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Everything you said, is wrong. I have 5 children, 2 with CF. The oldest child with CF did not immediately show symptoms, and went undiagnosed till age 6. Many children make it years without displaying symptoms, some well into adulthood. While they have multiple treatments and medications to treat their CF symptoms, your assertion that they cannot lead a normal life is way off base. My 2 CF kiddos are just like my 3 non-CF kiddos. They play, laugh, go to school, and have a normal life. As adults, they should be able to enter the workforce, with certain limitations due to lung function/treatment requirements. Statements like yours are ignorant at best, but debilitating at worst when kids with CF try to research their own condition. Keep this kind of nonsense to yourself please.
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There is no medical connection between having CF and having dementia but having said that CF has been known to affect many types of mucus membranes which is believed to be the correlation to CAVS or CAVD. The basic mutation panel across the country has a national average of 32 mutation in which are patients are screened for however a expanded panel for CF could include 40-60 CF mutations analyzed. We currently label CF mutation according to class where the worst cases create no functional CFTR or no useable CFTR. Due to the extensiveness of different types of mutations and the generalizations of classes it is very easy to believe the actual symptoms that can be directly correlated to CF have yet to be completely discovered or understood. Modern CF medication have come a long way however continue to become incredibly expensive. Kalydeco® and Orkambi® are two examples of cutting edge medications but for a patient without insurance administering these medications cost over 75k every three months. I would advise any person who is considered to have adult onset CF to strongly consider participation in any medical study because you very well could help to better understand what we do not currently.
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