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Question specific to those diagnosed as adults?

H

H2OSPORTSMOM

New member
I am interested to know if there are any readers that were diagnosed as adults or late teens? If so what symptoms lead to diagnosis? What results if any from sweat tests ? When genetic tests were done what genes were found? I am interested to hear from anyone who has variable genes, I think they are called ? I am just gathering some solid data for my next CF Center visit with my 18 year old son.
I would like to be more knowlwdgable so I can get the Doc to order more genetic tests and feel more confident in requesting this. Thanks to anyone who can help??
 
H

H2OSPORTSMOM

New member
I am interested to know if there are any readers that were diagnosed as adults or late teens? If so what symptoms lead to diagnosis? What results if any from sweat tests ? When genetic tests were done what genes were found? I am interested to hear from anyone who has variable genes, I think they are called ? I am just gathering some solid data for my next CF Center visit with my 18 year old son.
I would like to be more knowlwdgable so I can get the Doc to order more genetic tests and feel more confident in requesting this. Thanks to anyone who can help??
 
H

H2OSPORTSMOM

New member
I am interested to know if there are any readers that were diagnosed as adults or late teens? If so what symptoms lead to diagnosis? What results if any from sweat tests ? When genetic tests were done what genes were found? I am interested to hear from anyone who has variable genes, I think they are called ? I am just gathering some solid data for my next CF Center visit with my 18 year old son.
I would like to be more knowlwdgable so I can get the Doc to order more genetic tests and feel more confident in requesting this. Thanks to anyone who can help??
 
H

H2OSPORTSMOM

New member
I am interested to know if there are any readers that were diagnosed as adults or late teens? If so what symptoms lead to diagnosis? What results if any from sweat tests ? When genetic tests were done what genes were found? I am interested to hear from anyone who has variable genes, I think they are called ? I am just gathering some solid data for my next CF Center visit with my 18 year old son.
I would like to be more knowlwdgable so I can get the Doc to order more genetic tests and feel more confident in requesting this. Thanks to anyone who can help??
 
H

H2OSPORTSMOM

New member
I am interested to know if there are any readers that were diagnosed as adults or late teens? If so what symptoms lead to diagnosis? What results if any from sweat tests ? When genetic tests were done what genes were found? I am interested to hear from anyone who has variable genes, I think they are called ? I am just gathering some solid data for my next CF Center visit with my 18 year old son.
I would like to be more knowlwdgable so I can get the Doc to order more genetic tests and feel more confident in requesting this. Thanks to anyone who can help??
 
H

H2OSPORTSMOM

New member
I am interested to know if there are any readers that were diagnosed as adults or late teens? If so what symptoms lead to diagnosis? What results if any from sweat tests ? When genetic tests were done what genes were found? I am interested to hear from anyone who has variable genes, I think they are called ? I am just gathering some solid data for my next CF Center visit with my 18 year old son.
I would like to be more knowlwdgable so I can get the Doc to order more genetic tests and feel more confident in requesting this. Thanks to anyone who can help??
 
N

NoExcuses

New member
I was diagnosed early in life, but I do want to tell you that genes are irrelevant.

CFers are diagnosed later in life with some of the most "virulent" genes - which goes to prove that gentotype doesn't necessarily lead to clinical outcome.

It sounds like CF is new to you so I just wanted you to be aware of how CF genes really don't correlate well to clinical outcome.

Ambry Full Panel genetic tests are teh best way for your 18 year old son to find out if he has CF or not.
 
N

NoExcuses

New member
I was diagnosed early in life, but I do want to tell you that genes are irrelevant.

CFers are diagnosed later in life with some of the most "virulent" genes - which goes to prove that gentotype doesn't necessarily lead to clinical outcome.

It sounds like CF is new to you so I just wanted you to be aware of how CF genes really don't correlate well to clinical outcome.

Ambry Full Panel genetic tests are teh best way for your 18 year old son to find out if he has CF or not.
 
N

NoExcuses

New member
I was diagnosed early in life, but I do want to tell you that genes are irrelevant.

CFers are diagnosed later in life with some of the most "virulent" genes - which goes to prove that gentotype doesn't necessarily lead to clinical outcome.

It sounds like CF is new to you so I just wanted you to be aware of how CF genes really don't correlate well to clinical outcome.

Ambry Full Panel genetic tests are teh best way for your 18 year old son to find out if he has CF or not.
 
N

NoExcuses

New member
I was diagnosed early in life, but I do want to tell you that genes are irrelevant.

CFers are diagnosed later in life with some of the most "virulent" genes - which goes to prove that gentotype doesn't necessarily lead to clinical outcome.

It sounds like CF is new to you so I just wanted you to be aware of how CF genes really don't correlate well to clinical outcome.

Ambry Full Panel genetic tests are teh best way for your 18 year old son to find out if he has CF or not.
 
N

NoExcuses

New member
I was diagnosed early in life, but I do want to tell you that genes are irrelevant.

CFers are diagnosed later in life with some of the most "virulent" genes - which goes to prove that gentotype doesn't necessarily lead to clinical outcome.

It sounds like CF is new to you so I just wanted you to be aware of how CF genes really don't correlate well to clinical outcome.

Ambry Full Panel genetic tests are teh best way for your 18 year old son to find out if he has CF or not.
 
N

NoExcuses

New member
I was diagnosed early in life, but I do want to tell you that genes are irrelevant.

CFers are diagnosed later in life with some of the most "virulent" genes - which goes to prove that gentotype doesn't necessarily lead to clinical outcome.

It sounds like CF is new to you so I just wanted you to be aware of how CF genes really don't correlate well to clinical outcome.

Ambry Full Panel genetic tests are teh best way for your 18 year old son to find out if he has CF or not.
 
A

Alyssa

New member
I'm pretty sure you have already read all about us (see my blog page if not) -- my daughter was 14 and my son was 18 at diagnosis.

Yes, as sakasuka said -- get a full panel from Ambry -- it tests for all known genes at this time -- there are currently over 1500 known genes, with new genes being added from time to time -- when they first started testing they only had about 400 identified.
 
A

Alyssa

New member
I'm pretty sure you have already read all about us (see my blog page if not) -- my daughter was 14 and my son was 18 at diagnosis.

Yes, as sakasuka said -- get a full panel from Ambry -- it tests for all known genes at this time -- there are currently over 1500 known genes, with new genes being added from time to time -- when they first started testing they only had about 400 identified.
 
A

Alyssa

New member
I'm pretty sure you have already read all about us (see my blog page if not) -- my daughter was 14 and my son was 18 at diagnosis.

Yes, as sakasuka said -- get a full panel from Ambry -- it tests for all known genes at this time -- there are currently over 1500 known genes, with new genes being added from time to time -- when they first started testing they only had about 400 identified.
 
A

Alyssa

New member
I'm pretty sure you have already read all about us (see my blog page if not) -- my daughter was 14 and my son was 18 at diagnosis.

Yes, as sakasuka said -- get a full panel from Ambry -- it tests for all known genes at this time -- there are currently over 1500 known genes, with new genes being added from time to time -- when they first started testing they only had about 400 identified.
 
A

Alyssa

New member
I'm pretty sure you have already read all about us (see my blog page if not) -- my daughter was 14 and my son was 18 at diagnosis.

Yes, as sakasuka said -- get a full panel from Ambry -- it tests for all known genes at this time -- there are currently over 1500 known genes, with new genes being added from time to time -- when they first started testing they only had about 400 identified.
 
A

Alyssa

New member
I'm pretty sure you have already read all about us (see my blog page if not) -- my daughter was 14 and my son was 18 at diagnosis.

Yes, as sakasuka said -- get a full panel from Ambry -- it tests for all known genes at this time -- there are currently over 1500 known genes, with new genes being added from time to time -- when they first started testing they only had about 400 identified.
 
L

loredana

New member
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
 
L

loredana

New member
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
 
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