adult diagnosis?

[confused37]

My brother is 14 and we just found out he has CF. I'm 28 and have had lung infections and bronchitis off and on since i was a child. I know very little about CF, this is all so new to me. His doctor said that since we share the same father but not the same mother it is unlikely that I have it, but I could be a carrier. He also told me that it was rare for someone to be diagnosed so late in life, and most people with CF don't live past 25. I've seen several posts on this site from people who were diagnosed later in life. I'm interested in knowing how common this is. I plan on getting tested even though I don't have any other symptoms. I'm also concerned for my 3 children and the likelihood of them having it. Any information would be helpful as I am very new to this.

Thanks

 

[confused37]

My brother is 14 and we just found out he has CF. I'm 28 and have had lung infections and bronchitis off and on since i was a child. I know very little about CF, this is all so new to me. His doctor said that since we share the same father but not the same mother it is unlikely that I have it, but I could be a carrier. He also told me that it was rare for someone to be diagnosed so late in life, and most people with CF don't live past 25. I've seen several posts on this site from people who were diagnosed later in life. I'm interested in knowing how common this is. I plan on getting tested even though I don't have any other symptoms. I'm also concerned for my 3 children and the likelihood of them having it. Any information would be helpful as I am very new to this.

Thanks

 

[confused37]

My brother is 14 and we just found out he has CF. I'm 28 and have had lung infections and bronchitis off and on since i was a child. I know very little about CF, this is all so new to me. His doctor said that since we share the same father but not the same mother it is unlikely that I have it, but I could be a carrier. He also told me that it was rare for someone to be diagnosed so late in life, and most people with CF don't live past 25. I've seen several posts on this site from people who were diagnosed later in life. I'm interested in knowing how common this is. I plan on getting tested even though I don't have any other symptoms. I'm also concerned for my 3 children and the likelihood of them having it. Any information would be helpful as I am very new to this.

Thanks

 

[confused37]

My brother is 14 and we just found out he has CF. I'm 28 and have had lung infections and bronchitis off and on since i was a child. I know very little about CF, this is all so new to me. His doctor said that since we share the same father but not the same mother it is unlikely that I have it, but I could be a carrier. He also told me that it was rare for someone to be diagnosed so late in life, and most people with CF don't live past 25. I've seen several posts on this site from people who were diagnosed later in life. I'm interested in knowing how common this is. I plan on getting tested even though I don't have any other symptoms. I'm also concerned for my 3 children and the likelihood of them having it. Any information would be helpful as I am very new to this.

Thanks

 

[confused37]

My brother is 14 and we just found out he has CF. I'm 28 and have had lung infections and bronchitis off and on since i was a child. I know very little about CF, this is all so new to me. His doctor said that since we share the same father but not the same mother it is unlikely that I have it, but I could be a carrier. He also told me that it was rare for someone to be diagnosed so late in life, and most people with CF don't live past 25. I've seen several posts on this site from people who were diagnosed later in life. I'm interested in knowing how common this is. I plan on getting tested even though I don't have any other symptoms. I'm also concerned for my 3 children and the likelihood of them having it. Any information would be helpful as I am very new to this.
<br />
<br />Thanks

 

[mom2lillian]

Statistically speaking it would be a very freakish coincident for your mother to have children from two carriers and have both children receive those mutations in addition to hers. That being said that has happened, even on this board I believe.

Also I think your doctor is poorly informed because the median age is 37, not 25. Your brother should be reffered to a CF center and I would go through them with your questions and follow-up.

Aduld diagnosis are becoming more and more common. Many that woudl formerly have been 'sickly' asthma, bronchitis, COPD, diabetes, infertility, etc are finally getting correct diagnosis. The technology simply wasnt there previoiusly, I am 30, when I was 14 I was tested and re-tested and declared not to have it because they couldnt find my 2nd mutation and my sweat test was borderline. By 21 I had deteriorated enough to be diagnosed symptomatically despite not being able to find a 2nd mutation and still having a borderline sweat test. At 24 they retested me and they were able to find the 2nd mutation because it had been 'recently' discovered and added to the testing panel.

You will need a sweat test first and it will most likely be negative or borderline given your age it's just a guess. Then you will need an ambry genetic test. The cf center should be able to help you or help your doctor with all of this.

 

[mom2lillian]

Statistically speaking it would be a very freakish coincident for your mother to have children from two carriers and have both children receive those mutations in addition to hers. That being said that has happened, even on this board I believe.

Also I think your doctor is poorly informed because the median age is 37, not 25. Your brother should be reffered to a CF center and I would go through them with your questions and follow-up.

Aduld diagnosis are becoming more and more common. Many that woudl formerly have been 'sickly' asthma, bronchitis, COPD, diabetes, infertility, etc are finally getting correct diagnosis. The technology simply wasnt there previoiusly, I am 30, when I was 14 I was tested and re-tested and declared not to have it because they couldnt find my 2nd mutation and my sweat test was borderline. By 21 I had deteriorated enough to be diagnosed symptomatically despite not being able to find a 2nd mutation and still having a borderline sweat test. At 24 they retested me and they were able to find the 2nd mutation because it had been 'recently' discovered and added to the testing panel.

You will need a sweat test first and it will most likely be negative or borderline given your age it's just a guess. Then you will need an ambry genetic test. The cf center should be able to help you or help your doctor with all of this.

 

[mom2lillian]

Statistically speaking it would be a very freakish coincident for your mother to have children from two carriers and have both children receive those mutations in addition to hers. That being said that has happened, even on this board I believe.

Also I think your doctor is poorly informed because the median age is 37, not 25. Your brother should be reffered to a CF center and I would go through them with your questions and follow-up.

Aduld diagnosis are becoming more and more common. Many that woudl formerly have been 'sickly' asthma, bronchitis, COPD, diabetes, infertility, etc are finally getting correct diagnosis. The technology simply wasnt there previoiusly, I am 30, when I was 14 I was tested and re-tested and declared not to have it because they couldnt find my 2nd mutation and my sweat test was borderline. By 21 I had deteriorated enough to be diagnosed symptomatically despite not being able to find a 2nd mutation and still having a borderline sweat test. At 24 they retested me and they were able to find the 2nd mutation because it had been 'recently' discovered and added to the testing panel.

You will need a sweat test first and it will most likely be negative or borderline given your age it's just a guess. Then you will need an ambry genetic test. The cf center should be able to help you or help your doctor with all of this.

 

[mom2lillian]

Statistically speaking it would be a very freakish coincident for your mother to have children from two carriers and have both children receive those mutations in addition to hers. That being said that has happened, even on this board I believe.

Also I think your doctor is poorly informed because the median age is 37, not 25. Your brother should be reffered to a CF center and I would go through them with your questions and follow-up.

Aduld diagnosis are becoming more and more common. Many that woudl formerly have been 'sickly' asthma, bronchitis, COPD, diabetes, infertility, etc are finally getting correct diagnosis. The technology simply wasnt there previoiusly, I am 30, when I was 14 I was tested and re-tested and declared not to have it because they couldnt find my 2nd mutation and my sweat test was borderline. By 21 I had deteriorated enough to be diagnosed symptomatically despite not being able to find a 2nd mutation and still having a borderline sweat test. At 24 they retested me and they were able to find the 2nd mutation because it had been 'recently' discovered and added to the testing panel.

You will need a sweat test first and it will most likely be negative or borderline given your age it's just a guess. Then you will need an ambry genetic test. The cf center should be able to help you or help your doctor with all of this.

 

[mom2lillian]

Statistically speaking it would be a very freakish coincident for your mother to have children from two carriers and have both children receive those mutations in addition to hers. That being said that has happened, even on this board I believe.
<br />
<br />Also I think your doctor is poorly informed because the median age is 37, not 25. Your brother should be reffered to a CF center and I would go through them with your questions and follow-up.
<br />
<br />Aduld diagnosis are becoming more and more common. Many that woudl formerly have been 'sickly' asthma, bronchitis, COPD, diabetes, infertility, etc are finally getting correct diagnosis. The technology simply wasnt there previoiusly, I am 30, when I was 14 I was tested and re-tested and declared not to have it because they couldnt find my 2nd mutation and my sweat test was borderline. By 21 I had deteriorated enough to be diagnosed symptomatically despite not being able to find a 2nd mutation and still having a borderline sweat test. At 24 they retested me and they were able to find the 2nd mutation because it had been 'recently' discovered and added to the testing panel.
<br />
<br />You will need a sweat test first and it will most likely be negative or borderline given your age it's just a guess. Then you will need an ambry genetic test. The cf center should be able to help you or help your doctor with all of this.

 

[hockeykid]

Maybe you could make an appointment at an Adult Cystic Fibrosis Center for a consult. They will be able to answer any questions that you have. I would also ask for the Ambry Genetic Test that looks for all 1500 mutations. I believe it is called Ambry Amplified. Good luck to you.

 

[hockeykid]

Maybe you could make an appointment at an Adult Cystic Fibrosis Center for a consult. They will be able to answer any questions that you have. I would also ask for the Ambry Genetic Test that looks for all 1500 mutations. I believe it is called Ambry Amplified. Good luck to you.

 

[hockeykid]

Maybe you could make an appointment at an Adult Cystic Fibrosis Center for a consult. They will be able to answer any questions that you have. I would also ask for the Ambry Genetic Test that looks for all 1500 mutations. I believe it is called Ambry Amplified. Good luck to you.

 

[hockeykid]

Maybe you could make an appointment at an Adult Cystic Fibrosis Center for a consult. They will be able to answer any questions that you have. I would also ask for the Ambry Genetic Test that looks for all 1500 mutations. I believe it is called Ambry Amplified. Good luck to you.

 

[hockeykid]

Maybe you could make an appointment at an Adult Cystic Fibrosis Center for a consult. They will be able to answer any questions that you have. I would also ask for the Ambry Genetic Test that looks for all 1500 mutations. I believe it is called Ambry Amplified. Good luck to you.

 

[NYCLawGirl]

According to a doctor I spoke with recently 80% of people with CF are diagnosed by age 3. Among that group, about 50% will live to be over 25. (Keep in mind that life expectancy is a moving target -- it's constantly improving due to to new therapies, etc. Kids born with CF today are different than a child born and diagnosed early in the 80s. Also, more children are being diagnosed early now, regardless of disease severity, due to things like newborn screening, so this "25" number is going to change, and doesn't mean much anyway.)

An additional 10% of people with CF will be diagnosed by the time they hit 18. And then it's something like 5% of cases that are diagnosed after that as an adult. According to the doctor I was talking to, the left over percentage is people who are never diagnosed because they either have a benign mutation and never show ANY symptoms or the diagnosis is simply missed.

The doctor I was talking to was in fact a CF doctor (adult), but this is the first time I had heard those stats. After talking to him I was on my tx center's webpage and noticed they also use the "half of people with CF diagnosed in infancy or young childhood will survive past their late 20s" statistic, although they also say that number is increasing. Crazy.

Anyway, point is that even though only a small portion of cystics are diagnosed as adults, it definitely happens. There are plenty of people on this board who were diagnosed later. My guess is that people who receive a later in life diagnosis are more likely to seek support to get them through it, though, so the percentage on this board is probably a little skewed. That's totally just a guess on my part.

Good luck and hope you don't have CF. Regardless, welcome!

 

[NYCLawGirl]

According to a doctor I spoke with recently 80% of people with CF are diagnosed by age 3. Among that group, about 50% will live to be over 25. (Keep in mind that life expectancy is a moving target -- it's constantly improving due to to new therapies, etc. Kids born with CF today are different than a child born and diagnosed early in the 80s. Also, more children are being diagnosed early now, regardless of disease severity, due to things like newborn screening, so this "25" number is going to change, and doesn't mean much anyway.)

An additional 10% of people with CF will be diagnosed by the time they hit 18. And then it's something like 5% of cases that are diagnosed after that as an adult. According to the doctor I was talking to, the left over percentage is people who are never diagnosed because they either have a benign mutation and never show ANY symptoms or the diagnosis is simply missed.

The doctor I was talking to was in fact a CF doctor (adult), but this is the first time I had heard those stats. After talking to him I was on my tx center's webpage and noticed they also use the "half of people with CF diagnosed in infancy or young childhood will survive past their late 20s" statistic, although they also say that number is increasing. Crazy.

Anyway, point is that even though only a small portion of cystics are diagnosed as adults, it definitely happens. There are plenty of people on this board who were diagnosed later. My guess is that people who receive a later in life diagnosis are more likely to seek support to get them through it, though, so the percentage on this board is probably a little skewed. That's totally just a guess on my part.

Good luck and hope you don't have CF. Regardless, welcome!

 

[NYCLawGirl]

According to a doctor I spoke with recently 80% of people with CF are diagnosed by age 3. Among that group, about 50% will live to be over 25. (Keep in mind that life expectancy is a moving target -- it's constantly improving due to to new therapies, etc. Kids born with CF today are different than a child born and diagnosed early in the 80s. Also, more children are being diagnosed early now, regardless of disease severity, due to things like newborn screening, so this "25" number is going to change, and doesn't mean much anyway.)

An additional 10% of people with CF will be diagnosed by the time they hit 18. And then it's something like 5% of cases that are diagnosed after that as an adult. According to the doctor I was talking to, the left over percentage is people who are never diagnosed because they either have a benign mutation and never show ANY symptoms or the diagnosis is simply missed.

The doctor I was talking to was in fact a CF doctor (adult), but this is the first time I had heard those stats. After talking to him I was on my tx center's webpage and noticed they also use the "half of people with CF diagnosed in infancy or young childhood will survive past their late 20s" statistic, although they also say that number is increasing. Crazy.

Anyway, point is that even though only a small portion of cystics are diagnosed as adults, it definitely happens. There are plenty of people on this board who were diagnosed later. My guess is that people who receive a later in life diagnosis are more likely to seek support to get them through it, though, so the percentage on this board is probably a little skewed. That's totally just a guess on my part.

Good luck and hope you don't have CF. Regardless, welcome!

 

[NYCLawGirl]

According to a doctor I spoke with recently 80% of people with CF are diagnosed by age 3. Among that group, about 50% will live to be over 25. (Keep in mind that life expectancy is a moving target -- it's constantly improving due to to new therapies, etc. Kids born with CF today are different than a child born and diagnosed early in the 80s. Also, more children are being diagnosed early now, regardless of disease severity, due to things like newborn screening, so this "25" number is going to change, and doesn't mean much anyway.)

An additional 10% of people with CF will be diagnosed by the time they hit 18. And then it's something like 5% of cases that are diagnosed after that as an adult. According to the doctor I was talking to, the left over percentage is people who are never diagnosed because they either have a benign mutation and never show ANY symptoms or the diagnosis is simply missed.

The doctor I was talking to was in fact a CF doctor (adult), but this is the first time I had heard those stats. After talking to him I was on my tx center's webpage and noticed they also use the "half of people with CF diagnosed in infancy or young childhood will survive past their late 20s" statistic, although they also say that number is increasing. Crazy.

Anyway, point is that even though only a small portion of cystics are diagnosed as adults, it definitely happens. There are plenty of people on this board who were diagnosed later. My guess is that people who receive a later in life diagnosis are more likely to seek support to get them through it, though, so the percentage on this board is probably a little skewed. That's totally just a guess on my part.

Good luck and hope you don't have CF. Regardless, welcome!

 

[NYCLawGirl]

According to a doctor I spoke with recently 80% of people with CF are diagnosed by age 3. Among that group, about 50% will live to be over 25. (Keep in mind that life expectancy is a moving target -- it's constantly improving due to to new therapies, etc. Kids born with CF today are different than a child born and diagnosed early in the 80s. Also, more children are being diagnosed early now, regardless of disease severity, due to things like newborn screening, so this "25" number is going to change, and doesn't mean much anyway.)
<br />
<br />An additional 10% of people with CF will be diagnosed by the time they hit 18. And then it's something like 5% of cases that are diagnosed after that as an adult. According to the doctor I was talking to, the left over percentage is people who are never diagnosed because they either have a benign mutation and never show ANY symptoms or the diagnosis is simply missed.
<br />
<br />The doctor I was talking to was in fact a CF doctor (adult), but this is the first time I had heard those stats. After talking to him I was on my tx center's webpage and noticed they also use the "half of people with CF diagnosed in infancy or young childhood will survive past their late 20s" statistic, although they also say that number is increasing. Crazy.
<br />
<br />Anyway, point is that even though only a small portion of cystics are diagnosed as adults, it definitely happens. There are plenty of people on this board who were diagnosed later. My guess is that people who receive a later in life diagnosis are more likely to seek support to get them through it, though, so the percentage on this board is probably a little skewed. That's totally just a guess on my part.
<br />
<br />Good luck and hope you don't have CF. Regardless, welcome!