Resources for atypical cases

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mom2lillian

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>Pianist</b></i>

The only reason I say "atypical" is because when I asked my doctor a year ago about CF (because I noticed I had matching symptoms) he said you'd have clubbed fingers and you would've been very sick your whole life and would've died before you were 20. Turns out he was wrong. I went to the local Children's hospital today to do the ."</end quote></div>

Funny, that is the EXACT same thing not only a doctor but the person running the sweat test said to me at the age of 21! So it is sooooo not true.

Many doctors today are very ignorant to anythign but the 'norm' and need to be educated. THe guy I built the website with (who is an awesome advocate if you cant tell) has already been in contact with CFF and others trying to formulate a project or awareness so we can help to educate doctors. My case is used as a case study for incoming doctors at my local hospital.
 
M

mom2lillian

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>Pianist</b></i>

The only reason I say "atypical" is because when I asked my doctor a year ago about CF (because I noticed I had matching symptoms) he said you'd have clubbed fingers and you would've been very sick your whole life and would've died before you were 20. Turns out he was wrong. I went to the local Children's hospital today to do the ."</end quote></div>

Funny, that is the EXACT same thing not only a doctor but the person running the sweat test said to me at the age of 21! So it is sooooo not true.

Many doctors today are very ignorant to anythign but the 'norm' and need to be educated. THe guy I built the website with (who is an awesome advocate if you cant tell) has already been in contact with CFF and others trying to formulate a project or awareness so we can help to educate doctors. My case is used as a case study for incoming doctors at my local hospital.
 
M

mom2lillian

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>Pianist</b></i>

The only reason I say "atypical" is because when I asked my doctor a year ago about CF (because I noticed I had matching symptoms) he said you'd have clubbed fingers and you would've been very sick your whole life and would've died before you were 20. Turns out he was wrong. I went to the local Children's hospital today to do the ."</end quote></div>

Funny, that is the EXACT same thing not only a doctor but the person running the sweat test said to me at the age of 21! So it is sooooo not true.

Many doctors today are very ignorant to anythign but the 'norm' and need to be educated. THe guy I built the website with (who is an awesome advocate if you cant tell) has already been in contact with CFF and others trying to formulate a project or awareness so we can help to educate doctors. My case is used as a case study for incoming doctors at my local hospital.
 
M

mom2lillian

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>Pianist</b></i>

The only reason I say "atypical" is because when I asked my doctor a year ago about CF (because I noticed I had matching symptoms) he said you'd have clubbed fingers and you would've been very sick your whole life and would've died before you were 20. Turns out he was wrong. I went to the local Children's hospital today to do the ."</end quote>

Funny, that is the EXACT same thing not only a doctor but the person running the sweat test said to me at the age of 21! So it is sooooo not true.

Many doctors today are very ignorant to anythign but the 'norm' and need to be educated. THe guy I built the website with (who is an awesome advocate if you cant tell) has already been in contact with CFF and others trying to formulate a project or awareness so we can help to educate doctors. My case is used as a case study for incoming doctors at my local hospital.
 
M

mom2lillian

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>Pianist</b></i>

The only reason I say "atypical" is because when I asked my doctor a year ago about CF (because I noticed I had matching symptoms) he said you'd have clubbed fingers and you would've been very sick your whole life and would've died before you were 20. Turns out he was wrong. I went to the local Children's hospital today to do the ."</end quote>

Funny, that is the EXACT same thing not only a doctor but the person running the sweat test said to me at the age of 21! So it is sooooo not true.

Many doctors today are very ignorant to anythign but the 'norm' and need to be educated. THe guy I built the website with (who is an awesome advocate if you cant tell) has already been in contact with CFF and others trying to formulate a project or awareness so we can help to educate doctors. My case is used as a case study for incoming doctors at my local hospital.
 
H

hopesiris

Guest
There is no cure and you can't afford to wait for one. You can fight your CF though, and it sounds like you are doing as well as a person with CF can so you are incredibly lucky. Time to learn what your health baseline is right now and begin taking measures to keep it that way for as long as possible.

There are things you can do to improve your health and reduce bothersome symptoms. Airway clearance and exercise are key-nothing works better.
 
H

hopesiris

Guest
There is no cure and you can't afford to wait for one. You can fight your CF though, and it sounds like you are doing as well as a person with CF can so you are incredibly lucky. Time to learn what your health baseline is right now and begin taking measures to keep it that way for as long as possible.

There are things you can do to improve your health and reduce bothersome symptoms. Airway clearance and exercise are key-nothing works better.
 
H

hopesiris

Guest
There is no cure and you can't afford to wait for one. You can fight your CF though, and it sounds like you are doing as well as a person with CF can so you are incredibly lucky. Time to learn what your health baseline is right now and begin taking measures to keep it that way for as long as possible.

There are things you can do to improve your health and reduce bothersome symptoms. Airway clearance and exercise are key-nothing works better.
 
H

hopesiris

Guest
There is no cure and you can't afford to wait for one. You can fight your CF though, and it sounds like you are doing as well as a person with CF can so you are incredibly lucky. Time to learn what your health baseline is right now and begin taking measures to keep it that way for as long as possible.

There are things you can do to improve your health and reduce bothersome symptoms. Airway clearance and exercise are key-nothing works better.
 
H

hopesiris

Guest
There is no cure and you can't afford to wait for one. You can fight your CF though, and it sounds like you are doing as well as a person with CF can so you are incredibly lucky. Time to learn what your health baseline is right now and begin taking measures to keep it that way for as long as possible.

There are things you can do to improve your health and reduce bothersome symptoms. Airway clearance and exercise are key-nothing works better.
 
C

christenk

New member
This question is for bonniebaby-
My daughter has the same genetic combination as you (delta 508 and 5T).
I was just wondering how your physician described to you what the 5T variant is. As I understand it, the 5T variant is almost like a "mild" mutation in which there is some functioning of the CFTR gene. Is that accurate?
Thanks for your input!
Christen
 
C

christenk

New member
This question is for bonniebaby-
My daughter has the same genetic combination as you (delta 508 and 5T).
I was just wondering how your physician described to you what the 5T variant is. As I understand it, the 5T variant is almost like a "mild" mutation in which there is some functioning of the CFTR gene. Is that accurate?
Thanks for your input!
Christen
 
C

christenk

New member
This question is for bonniebaby-
My daughter has the same genetic combination as you (delta 508 and 5T).
I was just wondering how your physician described to you what the 5T variant is. As I understand it, the 5T variant is almost like a "mild" mutation in which there is some functioning of the CFTR gene. Is that accurate?
Thanks for your input!
Christen
 
C

christenk

New member
This question is for bonniebaby-
My daughter has the same genetic combination as you (delta 508 and 5T).
I was just wondering how your physician described to you what the 5T variant is. As I understand it, the 5T variant is almost like a "mild" mutation in which there is some functioning of the CFTR gene. Is that accurate?
Thanks for your input!
Christen
 
C

christenk

New member
This question is for bonniebaby-
<br />My daughter has the same genetic combination as you (delta 508 and 5T).
<br />I was just wondering how your physician described to you what the 5T variant is. As I understand it, the 5T variant is almost like a "mild" mutation in which there is some functioning of the CFTR gene. Is that accurate?
<br />Thanks for your input!
<br />Christen
 
D

dbtoo

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>Pianist</b></i>

The only reason I say "atypical" is because when I asked my doctor a year ago about CF (because I noticed I had matching symptoms) he said you'd have clubbed fingers and you would've been very sick your whole life and would've died before you were 20. Turns out he was wrong. I went to the local Children's hospital today to do the sweat chloride test and there was a guy right after me that was in his 40s I think they said they see about 5 adults a year for that test (?). The CF clinic I called said "we've been getting a lot of you guys lately that have no idea you have CF until a doctor accidently finds you have absent vas deferens."</end quote></div>

Dang right he's wrong! Find a new doctor, quick.

Opps, forgot I was supposed to die over 30 years ago! Dang alzheimers!
 
D

dbtoo

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>Pianist</b></i>

The only reason I say "atypical" is because when I asked my doctor a year ago about CF (because I noticed I had matching symptoms) he said you'd have clubbed fingers and you would've been very sick your whole life and would've died before you were 20. Turns out he was wrong. I went to the local Children's hospital today to do the sweat chloride test and there was a guy right after me that was in his 40s I think they said they see about 5 adults a year for that test (?). The CF clinic I called said "we've been getting a lot of you guys lately that have no idea you have CF until a doctor accidently finds you have absent vas deferens."</end quote></div>

Dang right he's wrong! Find a new doctor, quick.

Opps, forgot I was supposed to die over 30 years ago! Dang alzheimers!
 
D

dbtoo

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>Pianist</b></i>

The only reason I say "atypical" is because when I asked my doctor a year ago about CF (because I noticed I had matching symptoms) he said you'd have clubbed fingers and you would've been very sick your whole life and would've died before you were 20. Turns out he was wrong. I went to the local Children's hospital today to do the sweat chloride test and there was a guy right after me that was in his 40s I think they said they see about 5 adults a year for that test (?). The CF clinic I called said "we've been getting a lot of you guys lately that have no idea you have CF until a doctor accidently finds you have absent vas deferens."</end quote></div>

Dang right he's wrong! Find a new doctor, quick.

Opps, forgot I was supposed to die over 30 years ago! Dang alzheimers!
 
D

dbtoo

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>Pianist</b></i>

The only reason I say "atypical" is because when I asked my doctor a year ago about CF (because I noticed I had matching symptoms) he said you'd have clubbed fingers and you would've been very sick your whole life and would've died before you were 20. Turns out he was wrong. I went to the local Children's hospital today to do the sweat chloride test and there was a guy right after me that was in his 40s I think they said they see about 5 adults a year for that test (?). The CF clinic I called said "we've been getting a lot of you guys lately that have no idea you have CF until a doctor accidently finds you have absent vas deferens."</end quote>

Dang right he's wrong! Find a new doctor, quick.

Opps, forgot I was supposed to die over 30 years ago! Dang alzheimers!
 
D

dbtoo

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>Pianist</b></i>
<br />
<br />The only reason I say "atypical" is because when I asked my doctor a year ago about CF (because I noticed I had matching symptoms) he said you'd have clubbed fingers and you would've been very sick your whole life and would've died before you were 20. Turns out he was wrong. I went to the local Children's hospital today to do the sweat chloride test and there was a guy right after me that was in his 40s I think they said they see about 5 adults a year for that test (?). The CF clinic I called said "we've been getting a lot of you guys lately that have no idea you have CF until a doctor accidently finds you have absent vas deferens."</end quote>
<br />
<br />Dang right he's wrong! Find a new doctor, quick.
<br />
<br />Opps, forgot I was supposed to die over 30 years ago! Dang alzheimers!
 
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