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Cystic Fibrosis in Older People
This is not a question but a comment (forgive me, I am new to this forum.) I tried to comment on this, but it keeps taking me to the question section.
For the person whose uncle was diagnosed at 73 with Cystic Fibrosis: believe it, and help him buy a juicer.
He has a mild case and different mutation (may not have even been documented yet.)
Carrot/orange or carrot/apple at least twice a day and he will be ok, with the strong antibiotics that are now
available. The key is, treat lung infections quickly, with strong antibiotics, but remember they are NOT the
cure. His lungs desparately need water (four bottles a day) and large amounts of vitamin A and C.
You accomplish this with fresh juice: 2 large glasses a day. (juiceman.com....best brand to buy.)
He will be amazed at how he "clears up."
I am a 47 year old female with CF. The doctors have been WRONG about me all my life. There was a
period there where I did not see a cf doctor for 6 years (yes I said six) because I was so sick of being told I was or
would be sick, could never be this, could never do that. Extremely negative (and sometimes humiliating) environment.
The real truth is, that many people die young with CF, but not all of us.
I was diagonsed in 1965 when my brother was born. I was almost five. Because he was so very ill, he had major surgery when he was 3 days old. He is also still living. We are different, as he has a definate, severe case. I realize now that I would have not even been tested, (everyone in my family was tested, even my parents) if this had not happened to him. I would probably have been diagonsed at 40, when I had my first case of pneumonia. But then again, maybe not.
I am a college grad, enjoy a wonderful career in the advertising field, married, and have gotten to do and see alot....
live on a farm, own 2 businesses and jucie every single day. Although I no longer perform with a ballet company, I still take classes 3 times a week.
Your uncle has probably had symptoms after age 40.....getting older brings any disease to light. He just didn't know why it took so long to get over colds, etc.
His symptoms can be mananged....he (and you) need to find a good open-minded physican, and realize
that there is still so much about CF that is not known, and much on the internet is outdated. Each person with CF
has different symptoms. The ones listed on cff.org are a bit outdated, and do not list what an adult who has never
been diagnosed might have...(such as crushing, crushing fatigue, constant thirst, and no appetite whatsoever, due to
a low grade fever.)
In the meantime, you might help your uncle focus on what the cause is rather than the symptoms....ie ...the water and salt do not pass in and out of the cells properly. Replacing the water that a CF person's cells cannot absorb correctly is not something that I was ever told by any doctor. Doing my own reaseach, I found, most importantly that the lungs need water every single day to function properly. (not soft drinks, or tea, etc.) In my humble opinion, four bottles a day for an adult with CF is mandatory. Huge difference!
One more thing: the best site for people who actually have the disease is cysticfibrosis.com
And for the other person who in his "11 years of practice" has never seen older CF patients, there is a fairly large group of 50 year olds, and one woman I know who is in her 60's. We just have a different mutation, and stay in the
background. That's all.
Good luck!
This discussion is related to cystic fibrosis in older people?.
For the person whose uncle was diagnosed at 73 with Cystic Fibrosis: believe it, and help him buy a juicer.
He has a mild case and different mutation (may not have even been documented yet.)
Carrot/orange or carrot/apple at least twice a day and he will be ok, with the strong antibiotics that are now
available. The key is, treat lung infections quickly, with strong antibiotics, but remember they are NOT the
cure. His lungs desparately need water (four bottles a day) and large amounts of vitamin A and C.
You accomplish this with fresh juice: 2 large glasses a day. (juiceman.com....best brand to buy.)
He will be amazed at how he "clears up."
I am a 47 year old female with CF. The doctors have been WRONG about me all my life. There was a
period there where I did not see a cf doctor for 6 years (yes I said six) because I was so sick of being told I was or
would be sick, could never be this, could never do that. Extremely negative (and sometimes humiliating) environment.
The real truth is, that many people die young with CF, but not all of us.
I was diagonsed in 1965 when my brother was born. I was almost five. Because he was so very ill, he had major surgery when he was 3 days old. He is also still living. We are different, as he has a definate, severe case. I realize now that I would have not even been tested, (everyone in my family was tested, even my parents) if this had not happened to him. I would probably have been diagonsed at 40, when I had my first case of pneumonia. But then again, maybe not.
I am a college grad, enjoy a wonderful career in the advertising field, married, and have gotten to do and see alot....
live on a farm, own 2 businesses and jucie every single day. Although I no longer perform with a ballet company, I still take classes 3 times a week.
Your uncle has probably had symptoms after age 40.....getting older brings any disease to light. He just didn't know why it took so long to get over colds, etc.
His symptoms can be mananged....he (and you) need to find a good open-minded physican, and realize
that there is still so much about CF that is not known, and much on the internet is outdated. Each person with CF
has different symptoms. The ones listed on cff.org are a bit outdated, and do not list what an adult who has never
been diagnosed might have...(such as crushing, crushing fatigue, constant thirst, and no appetite whatsoever, due to
a low grade fever.)
In the meantime, you might help your uncle focus on what the cause is rather than the symptoms....ie ...the water and salt do not pass in and out of the cells properly. Replacing the water that a CF person's cells cannot absorb correctly is not something that I was ever told by any doctor. Doing my own reaseach, I found, most importantly that the lungs need water every single day to function properly. (not soft drinks, or tea, etc.) In my humble opinion, four bottles a day for an adult with CF is mandatory. Huge difference!
One more thing: the best site for people who actually have the disease is cysticfibrosis.com
And for the other person who in his "11 years of practice" has never seen older CF patients, there is a fairly large group of 50 year olds, and one woman I know who is in her 60's. We just have a different mutation, and stay in the
background. That's all.
Good luck!
This discussion is related to cystic fibrosis in older people?.
Sorry for the last post, my computer is having hiccups and sent it off before I was finished. It includes two links to two large online discussion groups run by persons with CF and/or their families, there are many more smaller groups on groups.yahoo.
I'm the mom of a 14 year old with CF but I have a number of online friends with CF who are in their 40s, 50s, 60's and even two in their 70s. So yes there are a few older PWCF (persons with CF) out there. There are about 1000 plus mutations that cause CF and even a few 'modifier genes' that also appear to impact on the course of the disease. Some mutations are pretty severe while others seem to be very, very mild.
The median survival age is about 37 now (it used to be about 3).and the median age is getting higher each year.
The oldest research/foundation for CF is located online at www.cff.org. This site has a lot of info about current studies and news.
My personal warning to newly diagnosed individuals is - DON"T read any books on CF most of them are old and the information they contain is outdated and pretty scary. Ask your CF doc, go to the CFF.org site and/or join an online CF group for the most accurate, uptodate info.
I'm the mom of a 14 year old with CF but I have a number of online friends with CF who are in their 40s, 50s, 60's and even two in their 70s. So yes there are a few older PWCF (persons with CF) out there. There are about 1000 plus mutations that cause CF and even a few 'modifier genes' that also appear to impact on the course of the disease. Some mutations are pretty severe while others seem to be very, very mild.
The median survival age is about 37 now (it used to be about 3).and the median age is getting higher each year.
The oldest research/foundation for CF is located online at www.cff.org. This site has a lot of info about current studies and news.
My personal warning to newly diagnosed individuals is - DON"T read any books on CF most of them are old and the information they contain is outdated and pretty scary. Ask your CF doc, go to the CFF.org site and/or join an online CF group for the most accurate, uptodate info.
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