Question specific to those diagnosed as adults?

[loredana]

Hi there - I was diagnosed in my mid-20s. I had had symptoms pretty much all my life, mostly lung involvement and sinus. As I've gotten older the GI stuff has kicked in. My sweat test done in my mid-20s was definitely positive, around 90 plus as i recall, although I had three or four negative sweat tests at age 12 or so. I just found out one of my mutations, 4005+2T>C, a couple years back and the other is unknown. John Hopkins found the first one as part of a participation in a study at my CF Center. If you have any other questions please feel free to ask <img src="i/expressions/face-icon-small-smile.gif" border="0">

Lori 45 y/o fwcf

 

[loredana]

Hi there - I was diagnosed in my mid-20s. I had had symptoms pretty much all my life, mostly lung involvement and sinus. As I've gotten older the GI stuff has kicked in. My sweat test done in my mid-20s was definitely positive, around 90 plus as i recall, although I had three or four negative sweat tests at age 12 or so. I just found out one of my mutations, 4005+2T>C, a couple years back and the other is unknown. John Hopkins found the first one as part of a participation in a study at my CF Center. If you have any other questions please feel free to ask <img src="i/expressions/face-icon-small-smile.gif" border="0">

Lori 45 y/o fwcf

 

[loredana]

Hi there - I was diagnosed in my mid-20s. I had had symptoms pretty much all my life, mostly lung involvement and sinus. As I've gotten older the GI stuff has kicked in. My sweat test done in my mid-20s was definitely positive, around 90 plus as i recall, although I had three or four negative sweat tests at age 12 or so. I just found out one of my mutations, 4005+2T>C, a couple years back and the other is unknown. John Hopkins found the first one as part of a participation in a study at my CF Center. If you have any other questions please feel free to ask <img src="i/expressions/face-icon-small-smile.gif" border="0">

Lori 45 y/o fwcf

 

[loredana]

Hi there - I was diagnosed in my mid-20s. I had had symptoms pretty much all my life, mostly lung involvement and sinus. As I've gotten older the GI stuff has kicked in. My sweat test done in my mid-20s was definitely positive, around 90 plus as i recall, although I had three or four negative sweat tests at age 12 or so. I just found out one of my mutations, 4005+2T>C, a couple years back and the other is unknown. John Hopkins found the first one as part of a participation in a study at my CF Center. If you have any other questions please feel free to ask <img src="i/expressions/face-icon-small-smile.gif" border="0">

Lori 45 y/o fwcf

 

[robert321]

i was diagnosed at 14 and had the symptoms pretty much all my life, and i guess the "symptoms" that got me diagnosed was my parents not listening to the doctor anymore about there's nothing wrong with me and to "shut my parents up" he sent me to a pulmonologist who found the cf in about 20 minutes, needless to say we don't go to this doctor anymore

 

[robert321]

i was diagnosed at 14 and had the symptoms pretty much all my life, and i guess the "symptoms" that got me diagnosed was my parents not listening to the doctor anymore about there's nothing wrong with me and to "shut my parents up" he sent me to a pulmonologist who found the cf in about 20 minutes, needless to say we don't go to this doctor anymore

 

[robert321]

i was diagnosed at 14 and had the symptoms pretty much all my life, and i guess the "symptoms" that got me diagnosed was my parents not listening to the doctor anymore about there's nothing wrong with me and to "shut my parents up" he sent me to a pulmonologist who found the cf in about 20 minutes, needless to say we don't go to this doctor anymore

 

[robert321]

i was diagnosed at 14 and had the symptoms pretty much all my life, and i guess the "symptoms" that got me diagnosed was my parents not listening to the doctor anymore about there's nothing wrong with me and to "shut my parents up" he sent me to a pulmonologist who found the cf in about 20 minutes, needless to say we don't go to this doctor anymore

 

[robert321]

i was diagnosed at 14 and had the symptoms pretty much all my life, and i guess the "symptoms" that got me diagnosed was my parents not listening to the doctor anymore about there's nothing wrong with me and to "shut my parents up" he sent me to a pulmonologist who found the cf in about 20 minutes, needless to say we don't go to this doctor anymore

 

[robert321]

i was diagnosed at 14 and had the symptoms pretty much all my life, and i guess the "symptoms" that got me diagnosed was my parents not listening to the doctor anymore about there's nothing wrong with me and to "shut my parents up" he sent me to a pulmonologist who found the cf in about 20 minutes, needless to say we don't go to this doctor anymore

 

[mom2lillian]

I was diagnosed at 21 years of age, my story is posted on my blog, here is a link

<a target=_blank class=ftalternatingbarlinklarge href="http://blogs.cysticfibrosis.com/blogpost.cfm?threadid=18351&catid=2108
">http://blogs.cysticfibrosis.co...8351&catid=2108
</a>

if it doesnt work the go to my blog to the arhcives under Mar2007 and it is one of the original posts labeled diagnosis journey.

I also have a post about getting Amrby genetics test done on my daughter and sister with information that I foudn useful.

<a target=_blank class=ftalternatingbarlinklarge href="http://blogs.cysticfibrosis.com/blogpost.cfm?threadid=21596&catid=2088
">http://blogs.cysticfibrosis.co...adid=21596&catid=2088
</a>
I woudl be happy to talk with you further.

 

[mom2lillian]

I was diagnosed at 21 years of age, my story is posted on my blog, here is a link

<a target=_blank class=ftalternatingbarlinklarge href="http://blogs.cysticfibrosis.com/blogpost.cfm?threadid=18351&catid=2108
">http://blogs.cysticfibrosis.co...8351&catid=2108
</a>

if it doesnt work the go to my blog to the arhcives under Mar2007 and it is one of the original posts labeled diagnosis journey.

I also have a post about getting Amrby genetics test done on my daughter and sister with information that I foudn useful.

<a target=_blank class=ftalternatingbarlinklarge href="http://blogs.cysticfibrosis.com/blogpost.cfm?threadid=21596&catid=2088
">http://blogs.cysticfibrosis.co...adid=21596&catid=2088
</a>
I woudl be happy to talk with you further.

 

[mom2lillian]

I was diagnosed at 21 years of age, my story is posted on my blog, here is a link

<a target=_blank class=ftalternatingbarlinklarge href="http://blogs.cysticfibrosis.com/blogpost.cfm?threadid=18351&catid=2108
">http://blogs.cysticfibrosis.co...8351&catid=2108
</a>

if it doesnt work the go to my blog to the arhcives under Mar2007 and it is one of the original posts labeled diagnosis journey.

I also have a post about getting Amrby genetics test done on my daughter and sister with information that I foudn useful.

<a target=_blank class=ftalternatingbarlinklarge href="http://blogs.cysticfibrosis.com/blogpost.cfm?threadid=21596&catid=2088
">http://blogs.cysticfibrosis.co...adid=21596&catid=2088
</a>
I woudl be happy to talk with you further.

 

[mom2lillian]

I was diagnosed at 21 years of age, my story is posted on my blog, here is a link

<a target=_blank class=ftalternatingbarlinklarge href="http://blogs.cysticfibrosis.com/blogpost.cfm?threadid=18351&catid=2108
">http://blogs.cysticfibrosis.co...8351&catid=2108
</a>

if it doesnt work the go to my blog to the arhcives under Mar2007 and it is one of the original posts labeled diagnosis journey.

I also have a post about getting Amrby genetics test done on my daughter and sister with information that I foudn useful.

<a target=_blank class=ftalternatingbarlinklarge href="http://blogs.cysticfibrosis.com/blogpost.cfm?threadid=21596&catid=2088
">http://blogs.cysticfibrosis.co...adid=21596&catid=2088
</a>
I woudl be happy to talk with you further.

 

[mom2lillian]

I was diagnosed at 21 years of age, my story is posted on my blog, here is a link

<a target=_blank class=ftalternatingbarlinklarge href="http://blogs.cysticfibrosis.com/blogpost.cfm?threadid=18351&catid=2108
">http://blogs.cysticfibrosis.co...8351&catid=2108
</a>

if it doesnt work the go to my blog to the arhcives under Mar2007 and it is one of the original posts labeled diagnosis journey.

I also have a post about getting Amrby genetics test done on my daughter and sister with information that I foudn useful.

<a target=_blank class=ftalternatingbarlinklarge href="http://blogs.cysticfibrosis.com/blogpost.cfm?threadid=21596&catid=2088
">http://blogs.cysticfibrosis.co...adid=21596&catid=2088
</a>
I woudl be happy to talk with you further.

 

[mom2lillian]

I was diagnosed at 21 years of age, my story is posted on my blog, here is a link

<a target=_blank class=ftalternatingbarlinklarge href="http://blogs.cysticfibrosis.com/blogpost.cfm?threadid=18351&catid=2108
">http://blogs.cysticfibrosis.co...8351&catid=2108
</a>

if it doesnt work the go to my blog to the arhcives under Mar2007 and it is one of the original posts labeled diagnosis journey.

I also have a post about getting Amrby genetics test done on my daughter and sister with information that I foudn useful.

<a target=_blank class=ftalternatingbarlinklarge href="http://blogs.cysticfibrosis.com/blogpost.cfm?threadid=21596&catid=2088
">http://blogs.cysticfibrosis.co...adid=21596&catid=2088
</a>
I woudl be happy to talk with you further.

 

[Wheezie]

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]

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]

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]

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!!