Question specific to those diagnosed as adults?

Wheezie · Jul 16, 2007

I was 11 when diagnosed, so not exactly late in life, but not exactly early either. I have a similar story as robert321 - my mom was persistent and finally we got referred to a pulmonologist and he knew right away - we did the sweat test to confirm it.

My early symptoms were digestive mostly. I had really bad stomachaches all the time and lets just say our bathroom didn't smell like roses!! My entire childhood was a food allergy experiment, which quite frankly really sucked. I started wheezing and coughing a little bit around 8 years old and that's what made my mom get more aggressive with my doc. my cough was dry though and sounded "fake." Although my mutation is the most common (double deltaF508), clinically I was very healthy until my mid-teens. What others have said is correct, geneotype really can't be used as a marker for clinical outcome. Even statistics and FEV1 only give you so much information. Every person and every BODY is different; this is true even amongst identical twins!!

Wheezie · Jul 16, 2007

I was 11 when diagnosed, so not exactly late in life, but not exactly early either. I have a similar story as robert321 - my mom was persistent and finally we got referred to a pulmonologist and he knew right away - we did the sweat test to confirm it.

My early symptoms were digestive mostly. I had really bad stomachaches all the time and lets just say our bathroom didn't smell like roses!! My entire childhood was a food allergy experiment, which quite frankly really sucked. I started wheezing and coughing a little bit around 8 years old and that's what made my mom get more aggressive with my doc. my cough was dry though and sounded "fake." Although my mutation is the most common (double deltaF508), clinically I was very healthy until my mid-teens. What others have said is correct, geneotype really can't be used as a marker for clinical outcome. Even statistics and FEV1 only give you so much information. Every person and every BODY is different; this is true even amongst identical twins!!

DarbSkull · Jul 16, 2007

I was diagnosed at 29. I have a twin sister (DarceyMaysey on this board) who also has CF and she wasn't diagnosed until she was 30.

We both were sick a lot growing up. I would get pneumonia twice a year like clockwork, but I always got better after a week or two. Other than never being able to gain weight and the twice a year sick thing I guess I was a pretty normal kid. As far as I know neither of us were ever tested for CF.

When I was 27 I got bronchitis and sinusitis that I couldn't get rid of. Over the next two years I saw an ENT specialist (sinus surgery) and an infectious disease specialist before I finally saw a pulminologist. I was in his office for 5 minutes before he told me I probably have CF.

He sent me to another pulminologist for the testing. There I scored over 100 on the sweat test (I've always tested well) and they sent my blood off for a genetic test. I don't know who tested it then, but they found one delta-F508 and one unidentified abnormal gene. Later after Darc was diagnosed they sent blood from both of us to Johns Hopkins for a twin study. Johns Hopkins identified our second mutation. I have it written down somewhere, but I don't know it offhand.

DarbSkull · Jul 16, 2007

I was diagnosed at 29. I have a twin sister (DarceyMaysey on this board) who also has CF and she wasn't diagnosed until she was 30.

We both were sick a lot growing up. I would get pneumonia twice a year like clockwork, but I always got better after a week or two. Other than never being able to gain weight and the twice a year sick thing I guess I was a pretty normal kid. As far as I know neither of us were ever tested for CF.

When I was 27 I got bronchitis and sinusitis that I couldn't get rid of. Over the next two years I saw an ENT specialist (sinus surgery) and an infectious disease specialist before I finally saw a pulminologist. I was in his office for 5 minutes before he told me I probably have CF.

He sent me to another pulminologist for the testing. There I scored over 100 on the sweat test (I've always tested well) and they sent my blood off for a genetic test. I don't know who tested it then, but they found one delta-F508 and one unidentified abnormal gene. Later after Darc was diagnosed they sent blood from both of us to Johns Hopkins for a twin study. Johns Hopkins identified our second mutation. I have it written down somewhere, but I don't know it offhand.

DarbSkull · Jul 16, 2007

I was diagnosed at 29. I have a twin sister (DarceyMaysey on this board) who also has CF and she wasn't diagnosed until she was 30.

We both were sick a lot growing up. I would get pneumonia twice a year like clockwork, but I always got better after a week or two. Other than never being able to gain weight and the twice a year sick thing I guess I was a pretty normal kid. As far as I know neither of us were ever tested for CF.

When I was 27 I got bronchitis and sinusitis that I couldn't get rid of. Over the next two years I saw an ENT specialist (sinus surgery) and an infectious disease specialist before I finally saw a pulminologist. I was in his office for 5 minutes before he told me I probably have CF.

He sent me to another pulminologist for the testing. There I scored over 100 on the sweat test (I've always tested well) and they sent my blood off for a genetic test. I don't know who tested it then, but they found one delta-F508 and one unidentified abnormal gene. Later after Darc was diagnosed they sent blood from both of us to Johns Hopkins for a twin study. Johns Hopkins identified our second mutation. I have it written down somewhere, but I don't know it offhand.

DarbSkull · Jul 16, 2007

I was diagnosed at 29. I have a twin sister (DarceyMaysey on this board) who also has CF and she wasn't diagnosed until she was 30.

We both were sick a lot growing up. I would get pneumonia twice a year like clockwork, but I always got better after a week or two. Other than never being able to gain weight and the twice a year sick thing I guess I was a pretty normal kid. As far as I know neither of us were ever tested for CF.

When I was 27 I got bronchitis and sinusitis that I couldn't get rid of. Over the next two years I saw an ENT specialist (sinus surgery) and an infectious disease specialist before I finally saw a pulminologist. I was in his office for 5 minutes before he told me I probably have CF.

He sent me to another pulminologist for the testing. There I scored over 100 on the sweat test (I've always tested well) and they sent my blood off for a genetic test. I don't know who tested it then, but they found one delta-F508 and one unidentified abnormal gene. Later after Darc was diagnosed they sent blood from both of us to Johns Hopkins for a twin study. Johns Hopkins identified our second mutation. I have it written down somewhere, but I don't know it offhand.

DarbSkull · Jul 16, 2007

I was diagnosed at 29. I have a twin sister (DarceyMaysey on this board) who also has CF and she wasn't diagnosed until she was 30.

We both were sick a lot growing up. I would get pneumonia twice a year like clockwork, but I always got better after a week or two. Other than never being able to gain weight and the twice a year sick thing I guess I was a pretty normal kid. As far as I know neither of us were ever tested for CF.

When I was 27 I got bronchitis and sinusitis that I couldn't get rid of. Over the next two years I saw an ENT specialist (sinus surgery) and an infectious disease specialist before I finally saw a pulminologist. I was in his office for 5 minutes before he told me I probably have CF.

He sent me to another pulminologist for the testing. There I scored over 100 on the sweat test (I've always tested well) and they sent my blood off for a genetic test. I don't know who tested it then, but they found one delta-F508 and one unidentified abnormal gene. Later after Darc was diagnosed they sent blood from both of us to Johns Hopkins for a twin study. Johns Hopkins identified our second mutation. I have it written down somewhere, but I don't know it offhand.

DarbSkull · Jul 16, 2007

I was diagnosed at 29. I have a twin sister (DarceyMaysey on this board) who also has CF and she wasn't diagnosed until she was 30.

We both were sick a lot growing up. I would get pneumonia twice a year like clockwork, but I always got better after a week or two. Other than never being able to gain weight and the twice a year sick thing I guess I was a pretty normal kid. As far as I know neither of us were ever tested for CF.

When I was 27 I got bronchitis and sinusitis that I couldn't get rid of. Over the next two years I saw an ENT specialist (sinus surgery) and an infectious disease specialist before I finally saw a pulminologist. I was in his office for 5 minutes before he told me I probably have CF.

He sent me to another pulminologist for the testing. There I scored over 100 on the sweat test (I've always tested well) and they sent my blood off for a genetic test. I don't know who tested it then, but they found one delta-F508 and one unidentified abnormal gene. Later after Darc was diagnosed they sent blood from both of us to Johns Hopkins for a twin study. Johns Hopkins identified our second mutation. I have it written down somewhere, but I don't know it offhand.

H2OSPORTSMOM · Jul 17, 2007