brothers recent diagnosis

C

confused37

New member
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
 
C

confused37

New member
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
 
C

confused37

New member
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
 
C

confused37

New member
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
 
C

confused37

New member
<br />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
 
J

JORDYSMOM

New member
Welcome. You are where I was at 4.5 years ago. My son will be 20 in July. He was diagnosed at 15. I had never heard of CF before. I always felt that there had to be something more serious going on with my son. But, after seeing MANY different doctors, in two different states, I thought I should accept the fact that it was just allergies & asthma.

Boy have I gotten an education over these last few years! I don't thinks it's a horrible idea to get yourself tested. I know of people who have children with 2 different spouces, and were unlucky enough to have found a CF carrier both times.

I wish you and your brother the best. Keep us posted on you guys.

Stacey
 
J

JORDYSMOM

New member
Welcome. You are where I was at 4.5 years ago. My son will be 20 in July. He was diagnosed at 15. I had never heard of CF before. I always felt that there had to be something more serious going on with my son. But, after seeing MANY different doctors, in two different states, I thought I should accept the fact that it was just allergies & asthma.

Boy have I gotten an education over these last few years! I don't thinks it's a horrible idea to get yourself tested. I know of people who have children with 2 different spouces, and were unlucky enough to have found a CF carrier both times.

I wish you and your brother the best. Keep us posted on you guys.

Stacey
 
J

JORDYSMOM

New member
Welcome. You are where I was at 4.5 years ago. My son will be 20 in July. He was diagnosed at 15. I had never heard of CF before. I always felt that there had to be something more serious going on with my son. But, after seeing MANY different doctors, in two different states, I thought I should accept the fact that it was just allergies & asthma.

Boy have I gotten an education over these last few years! I don't thinks it's a horrible idea to get yourself tested. I know of people who have children with 2 different spouces, and were unlucky enough to have found a CF carrier both times.

I wish you and your brother the best. Keep us posted on you guys.

Stacey
 
J

JORDYSMOM

New member
Welcome. You are where I was at 4.5 years ago. My son will be 20 in July. He was diagnosed at 15. I had never heard of CF before. I always felt that there had to be something more serious going on with my son. But, after seeing MANY different doctors, in two different states, I thought I should accept the fact that it was just allergies & asthma.

Boy have I gotten an education over these last few years! I don't thinks it's a horrible idea to get yourself tested. I know of people who have children with 2 different spouces, and were unlucky enough to have found a CF carrier both times.

I wish you and your brother the best. Keep us posted on you guys.

Stacey
 
J

JORDYSMOM

New member
Welcome. You are where I was at 4.5 years ago. My son will be 20 in July. He was diagnosed at 15. I had never heard of CF before. I always felt that there had to be something more serious going on with my son. But, after seeing MANY different doctors, in two different states, I thought I should accept the fact that it was just allergies & asthma.
<br />
<br />Boy have I gotten an education over these last few years! I don't thinks it's a horrible idea to get yourself tested. I know of people who have children with 2 different spouces, and were unlucky enough to have found a CF carrier both times.
<br />
<br />I wish you and your brother the best. Keep us posted on you guys.
<br />
<br />Stacey
<br />
 
N

NancyLKF

New member
Welcome to the site. I'm sorry to hear about your brother's diagnosis and I understand your fears for your children.
My daughter was diagnosed at birth through newborn screening and now, 1 year later she is a happy, healthy running around kid. Our routine is different than most families out there but its become totally normal to us.
Our doctors have been VERY optimistic and given us tons of hope. There are so many drugs in the pipeline now that could mean a normal life span for CFers in the near future.
and so many other treatments available right now to help them live healthy lives - there is reason to be hopeful!
 
N

NancyLKF

New member
Welcome to the site. I'm sorry to hear about your brother's diagnosis and I understand your fears for your children.
My daughter was diagnosed at birth through newborn screening and now, 1 year later she is a happy, healthy running around kid. Our routine is different than most families out there but its become totally normal to us.
Our doctors have been VERY optimistic and given us tons of hope. There are so many drugs in the pipeline now that could mean a normal life span for CFers in the near future.
and so many other treatments available right now to help them live healthy lives - there is reason to be hopeful!
 
N

NancyLKF

New member
Welcome to the site. I'm sorry to hear about your brother's diagnosis and I understand your fears for your children.
My daughter was diagnosed at birth through newborn screening and now, 1 year later she is a happy, healthy running around kid. Our routine is different than most families out there but its become totally normal to us.
Our doctors have been VERY optimistic and given us tons of hope. There are so many drugs in the pipeline now that could mean a normal life span for CFers in the near future.
and so many other treatments available right now to help them live healthy lives - there is reason to be hopeful!
 
N

NancyLKF

New member
Welcome to the site. I'm sorry to hear about your brother's diagnosis and I understand your fears for your children.
My daughter was diagnosed at birth through newborn screening and now, 1 year later she is a happy, healthy running around kid. Our routine is different than most families out there but its become totally normal to us.
Our doctors have been VERY optimistic and given us tons of hope. There are so many drugs in the pipeline now that could mean a normal life span for CFers in the near future.
and so many other treatments available right now to help them live healthy lives - there is reason to be hopeful!
 
N

NancyLKF

New member
Welcome to the site. I'm sorry to hear about your brother's diagnosis and I understand your fears for your children.
<br />My daughter was diagnosed at birth through newborn screening and now, 1 year later she is a happy, healthy running around kid. Our routine is different than most families out there but its become totally normal to us.
<br />Our doctors have been VERY optimistic and given us tons of hope. There are so many drugs in the pipeline now that could mean a normal life span for CFers in the near future.
<br />and so many other treatments available right now to help them live healthy lives - there is reason to be hopeful!
 
J

just1more

New member
Welcome to the site.

First of all, get yourself tested, based upon several things you posted the Dr is not knowledgeable about CF. You have a 50% chance of being a carrier; the likelihood of CF is less, unless your mother is a carrier and there is no way to know without testing.

Second, being diagnosed 'later' in life is very common. Plus, 14 is not late in life, we have many on the site that were not diagnosed until there 20's & 30's.

Lastly, many/most with CF outlive 25 these days. It is a reality that early-mid 20's is a common age to begin developing issues, and often begin discussing transplants. BUT it is not anything you can count on. Two siblings can have drastically different outcomes, CF is very unpredictable. There are some who live into their 40's without ever having a transplant and we have a boy here that had one at 7 (sorry if I got that wrong Victoria). Overall, the CF foundation lists a median age of 36 for patients with CF.

Hope these answer some of your questions. The only way to start to understand is to ask, so feel free to keep it up <img src="i/expressions/face-icon-small-smile.gif" border="0">
 
J

just1more

New member
Welcome to the site.

First of all, get yourself tested, based upon several things you posted the Dr is not knowledgeable about CF. You have a 50% chance of being a carrier; the likelihood of CF is less, unless your mother is a carrier and there is no way to know without testing.

Second, being diagnosed 'later' in life is very common. Plus, 14 is not late in life, we have many on the site that were not diagnosed until there 20's & 30's.

Lastly, many/most with CF outlive 25 these days. It is a reality that early-mid 20's is a common age to begin developing issues, and often begin discussing transplants. BUT it is not anything you can count on. Two siblings can have drastically different outcomes, CF is very unpredictable. There are some who live into their 40's without ever having a transplant and we have a boy here that had one at 7 (sorry if I got that wrong Victoria). Overall, the CF foundation lists a median age of 36 for patients with CF.

Hope these answer some of your questions. The only way to start to understand is to ask, so feel free to keep it up <img src="i/expressions/face-icon-small-smile.gif" border="0">
 
J

just1more

New member
Welcome to the site.

First of all, get yourself tested, based upon several things you posted the Dr is not knowledgeable about CF. You have a 50% chance of being a carrier; the likelihood of CF is less, unless your mother is a carrier and there is no way to know without testing.

Second, being diagnosed 'later' in life is very common. Plus, 14 is not late in life, we have many on the site that were not diagnosed until there 20's & 30's.

Lastly, many/most with CF outlive 25 these days. It is a reality that early-mid 20's is a common age to begin developing issues, and often begin discussing transplants. BUT it is not anything you can count on. Two siblings can have drastically different outcomes, CF is very unpredictable. There are some who live into their 40's without ever having a transplant and we have a boy here that had one at 7 (sorry if I got that wrong Victoria). Overall, the CF foundation lists a median age of 36 for patients with CF.

Hope these answer some of your questions. The only way to start to understand is to ask, so feel free to keep it up <img src="i/expressions/face-icon-small-smile.gif" border="0">
 
J

just1more

New member
Welcome to the site.

First of all, get yourself tested, based upon several things you posted the Dr is not knowledgeable about CF. You have a 50% chance of being a carrier; the likelihood of CF is less, unless your mother is a carrier and there is no way to know without testing.

Second, being diagnosed 'later' in life is very common. Plus, 14 is not late in life, we have many on the site that were not diagnosed until there 20's & 30's.

Lastly, many/most with CF outlive 25 these days. It is a reality that early-mid 20's is a common age to begin developing issues, and often begin discussing transplants. BUT it is not anything you can count on. Two siblings can have drastically different outcomes, CF is very unpredictable. There are some who live into their 40's without ever having a transplant and we have a boy here that had one at 7 (sorry if I got that wrong Victoria). Overall, the CF foundation lists a median age of 36 for patients with CF.

Hope these answer some of your questions. The only way to start to understand is to ask, so feel free to keep it up <img src="i/expressions/face-icon-small-smile.gif" border="0">
 
J

just1more

New member
Welcome to the site.
<br />
<br />First of all, get yourself tested, based upon several things you posted the Dr is not knowledgeable about CF. You have a 50% chance of being a carrier; the likelihood of CF is less, unless your mother is a carrier and there is no way to know without testing.
<br />
<br />Second, being diagnosed 'later' in life is very common. Plus, 14 is not late in life, we have many on the site that were not diagnosed until there 20's & 30's.
<br />
<br />Lastly, many/most with CF outlive 25 these days. It is a reality that early-mid 20's is a common age to begin developing issues, and often begin discussing transplants. BUT it is not anything you can count on. Two siblings can have drastically different outcomes, CF is very unpredictable. There are some who live into their 40's without ever having a transplant and we have a boy here that had one at 7 (sorry if I got that wrong Victoria). Overall, the CF foundation lists a median age of 36 for patients with CF.
<br />
<br />Hope these answer some of your questions. The only way to start to understand is to ask, so feel free to keep it up <img src="i/expressions/face-icon-small-smile.gif" border="0">
 
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