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Can you tell me in detail more of your situation. I seem to be going thru the same symptoms. I'm 37 and trying to figure out how this happened.
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"Adult onset" Cystic Fibrosis is the perfect term for people like me, because I did have CF emerge at age 48. I had NO symptoms at all before then, and had not missed a single day of work for 19 years previously to the emergence of CF. I had none of the symptoms many people on this website say they experienced when they were younger (severe asthma, bronchitis, digestive issues, etc.). My symptoms came out of nowhere, and had my doctors completely baffled. Fortunately, my CF genetic mutations seem to be limited to respiratory issues, and it is possible that my particular mutations also allowed for the emergence of Cystic Fibrosis later in life.
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This is my story: I had no symptoms of Cystic Fibrosis at all when I was young, and there are no known incidences of the disease in any family member. I did get a very mild case of asthma at age 36, and it remains mild to this day; I can't even tell I have it. At age 48 I had bronchitis four times during the year. Starting at age 49 the infections became pneumonia two times a year. I started seeing a fantastic pulmonologist who wanted to get to the cause of the lung infections. He suspected that I may have infected sinuses and sent me to an E.N.T., who ordered a CT scan. My sinuses had massive infection, but I had no symptoms of a sinus infection, just recurring pneumonia. I had a sinus surgery to clean out all the infection, which was followed by pneumonia, which was followed by another sinus infection, then pneumonia, with two of each type of infection every year. The cycle still continues now that I am age 58. I have had 4 sinus surgeries to clean out infection and help with drainage, but nothing stops the thick, sticky mucus in the sinuses from leading to another pneumonia. My doctor suspected that I had bronchiectasis, and I went to National Jewish Medical Center in Denver in 2009, where that was confirmed. They also did the genetic testing for Cystic Fibrosis, which was positive (the salt test, however, was negative).
I wonder if my particular genetic mutations, which affect the respiratory system, have also affected the timing of the onset of Cystic Fibrosis. If doctors could figure out why my genes waited to kick in until age 48 (adult onset Cystic Fibrosis), that might help in figuring out how to keep CF genes from "turning on" at all. That's the cure we're all hoping for.
If you are experiencing symptoms of CF, find a good pulmonologist. It's amazing how few doctors are aware that adult onset Cystic Fibrosis even exists. Because of my CF diagnosis, my pulmonologist has sent several of his other patients for genetic testing, and they, too have been found to have CF. At the Cystic Fibrosis clinic I go to, there are nine other patients like me. Thankfully, medical conventions are finally including talks on adult onset Cystic Fibrosis to spread the word. I hope you don't have CF, but if your doctors think (or you make them aware) that it is a possibility, I wish you the best in getting the medical care you need.
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Terrible story....i just for the life of me dont understand why you americans cant get a hold on your healthcare,anybody tries to make changes and they fool you into voting against it.In my country no one ever goes bancrupt or looses their home to pay for medical bills,i mean if that was possible why even work?,we all get sick sooner or later. God bless canada i guess

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they should be giving you enzyme therapy, puffers etc to help with all your issues.....disgusting that they have not.....there are all sorts of meds and therapies to help people with cf......
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Thank you for your post. My mom says that her doctor suggested she has CF (at the age of 80). She's had difficulty breathing and bouts of pneumonia. I don't know if she's had genetic testing, but I'm going to be asking her that question shortly. I thought CF was diagnosed in childhood and infancy, so I'm really surprised at what I'm learning about it now. Thanks for your postings and information. I'll also ask if she's been tested for Lyme Disease as well, since someone on here suggested that as well, since it mimmicks other diseases.
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I just came across your post today and I would like to ask how you are doing???

I hope things improved for you.
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Hi everyone,

I am 31 y.o, and have started having this recurrent pulmonary and sinus issues 5 years ago. I had developed a bronchitis that took longer than normal to cure, and since then I have this constant post nasal drip (with very thick mucus) and coughing. I have visited numerous doctors, but remain without diagnosis. Last year I started having digestive issues as well. It started as vomiting and diarrhea, bloating and abdominal pain, and despite therapies I still have issues. During an upper endoscopy, the doc. told me that I should pay attention to my pancreas, but did no further examination. I have also lost 5kg since december last year, even though I eat a lot. I have this pale floating stools, so I assume that the nutrients are not being absorbed properly.

Doing some research, I realise that I have many of the symptoms of CF and I am really worried. I am afraid that doctors will not even consider doing the examinations for CF, since they presume that it manifests only in early childhood.

Please advice me on what to do.

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i also have a cousin who was diagnosed with cf as a baby. Most of the people on my mom's side of the family have been tested and are carriers of the genetic mutation. i have just now started doing some research on it. i have become very curious because my cousin josh the older brother of my cousin who has been diagnosed with cf has been having issues with his pancreas since childhood and has just recently been having issues with his gallbladder. These two brothers do not have the same father so josh has never been tested. i think he could possibly have cf as well. My mom also had pancretitis, liver and gallbladder problems.. Now that i think about it, everyone has had problems with their gallbladder except for me

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reading all your post gave me an insight of what maybe going on with me...thank you so much for sharing now I will be armed when I see my doc on thursday for eleveated pancreatic enzymes...trully after I have had so many problems breathing and being treated for bronchitis, asthma etc.
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Adult onset cystic fibrosis was new to me until a few years ago when a close friend of the family got sick and passed away he was in his early 60's From the time he was told what it was he only lived a year . My first wife died from CF at the age of 22 and I was always told she wold not live to see 30 or 40 years old but as she got older you would hear of people with it that were older than that most only had it in the pancreas and not the lungs .So when my father told me his friend had died and it was CF I told him their is no way he died from that he had never been treated for Asthma or anything he thout he had a bad cold went to tthe doc. office and never got better . my dad said look up Adult onset cystic  so I googled it and their it was .Not sure for the adults but the kids that are older and not  infants that are just being diagnosed I think it has to do with the climate they live in the dryer the better

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I'm feeling I may have CF also. Worst part recently at age 49, my bone pain hurts so bad!!! Feel like I've been run over , yet I haven't.
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This discussion brings up an important side question. Are depression and dementia disorders of malabsorption? How many people are walking around as unknowing carriers of CF? Interesting anecdotal evidence: some people who do not have CF, but are carriers, have subclinical symptoms, like intestinal issues, failure to thrive as infants, skin rashes, allergies, asthma, etc.

Consider the prevalance of dementia, and specific types of dementia, such as Alzheimer's. Consider the prevalence of cystic fibrosis. Then consider the prevalance of cystic fibrosis carriers.

Now consider this:

"Each time two CF carriers have a child together, there is a 1 in 4 chance that both will pass along their CF mutation to their child. Because the child would get two CF gene mutations, the child would have CF. However, there is a 3 in 4 chance that each child will NOT have CF."

So for every person with cystic fibrosis, how many unknown carriers are walking around? How many of those have malabsorpton issues attributed to other causes?

Has dementia become more prevalent since medium chain triglycerides like palm oil and coconut oil have fallen out of favor with dietitians?

Your question has started me thinking.

 

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Here's some more food for thought. More than 1500 mutations for CF have been identified since the discovery of CFTR gene. Only 20 of these are common mutations. Considering that the rest are rare, with some known only in one individual or one ethnic group, it is entirely possible that different types of CF mutations express themselves differently. Perhaps this is one explanation for adult onset CF. And since each individual's genetic makeup is different, it could be that other genetic factors prevent expression of CF in certain people until well into adulthood.

There is much more research to be done about CF.

 

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I am very interested in hearing more about your experience with Chinese medicine for treatment . I am 25 with CF and looking to step away from any pharmaceutical drugs I can. I eat healthy and want to do whatever I can to stay healthy as naturally as possible.
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