mi wife is 65 years old and has been affected by respiratory problems since 1985. During the last two years, her condition has worsened, but so far, doctors don't know the cause; the lungs specialist is suspecting CF and indicated a genetic test. Is anybody out there, older than 50-60 years, who has been diagnosed with CF? If so, would he/she be so kind to indicate me where to look for help and advice? Thanks
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seniors with CF
- Thread starter MANAGUS
- Start date
There are people with CF in their 60's. There may even be some 70 year olds out there somewhere. Many of these older people with CF were diagnosed very late in their lives. I am 57 years old and was diagnosed at age 27. One of my best friends is 62 and he has CF.
There is a huge range in the severity of symptoms with CF. This is partially due to the many different gene mutations that make up this disease. There are other physiological factors that affect symptom severity and disease progression in each individual. Currently, there is no way to predict how the disease will progress based on the specific genetic mutation. Some of the other personal physiological factors that may affect this disease have not been scientifically identified.
If your wife's pulmonary doc suspects CF, I would suggest that you find your local CF center hospital and be tested there. Don't trust anyone but a CF center to test her for CF.
There is a huge range in the severity of symptoms with CF. This is partially due to the many different gene mutations that make up this disease. There are other physiological factors that affect symptom severity and disease progression in each individual. Currently, there is no way to predict how the disease will progress based on the specific genetic mutation. Some of the other personal physiological factors that may affect this disease have not been scientifically identified.
If your wife's pulmonary doc suspects CF, I would suggest that you find your local CF center hospital and be tested there. Don't trust anyone but a CF center to test her for CF.
You deffinately need to go to a CF center but don't depend on genetic testing alone. I haven't had genetic testing for many years but at the time they had not discovered my mutation. I was diagnosed by the sweat chloride test alone. It's still the best diagnostic tool available according to the CF foundation. I also have every symptom and am totally pancreatic insufficient. Again go to an accredited CF center as the sweat test can be performed incorrectly. I wasn't diagnosed until I was 28, I'm finding thats pretty common in those of us who are older. I'm 46 now and have hopes to live to my 60"s but thats something only God can determine, I'm sure going to keep doing my part though. cfNana
I am 53 and had about 10 sweat tests, including at CF centers, and none of them showed that I had CF. However, a genetic blood test about 10 years ago definitely confirmed the diagnosis. I had been treated my whole life with the same meds as someone with CF, except for Pulmozyme, which insurance would only cover with a CF diagnosis (that was about 10 years ago). My point is that the sweat test does not catch everyone with CF. So, if for some reason that test doesn't show CF and you still think you might have it, insist on a blood test. I am doing very well, working full time, raising two teenagers, and being diligent about my meds and CPT.
Just curious anonymous, what were your numbers when you had your sweat chloride tests done? 60 and above are considered positive. I guess adults are a little higher than normal but according to the CF guidelines 60 still means positive. The first childrens hospital I was tested at didn't think mine were positive because I was an adult but the othe other major Cf centers thought I was deffinately positive. There is also another test other than gene testing called a nasal PD. I would say someone new coming into the cf world should not rely on just one test unless it comes back positive. I was just trying to cover the different ways you can be tested. I realize that sometimes a negative sweat test doesn't mean that you don't have the disease. Theres a broader picture involved. Thanks cfNana
I do not know what my sweat test numbers were, since the tests were done in my childhood, teens and 20's. I had several tests done nasally as well, but I could not say for sure what they were called. For me, the only test that confirmed CF was the genetic blood test. I think with all the possible mutations that can now be identified, they are diagnosing more and more people later in life. It's so good to see this forum available to help spread information to people. Keep up the good work!