Resources for atypical cases

[wanderlost]

<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>


It was my understadning that some male carriers can actually have the absent vas deferns as well - meaning that maybe you don't have Cf at all ( have you had the ambry testing?) but are only a carrier (hence why you haven't had any other symptoms). I don't know the rest of your story, so I don't know if this would apply.

 

[wanderlost]

<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>


It was my understadning that some male carriers can actually have the absent vas deferns as well - meaning that maybe you don't have Cf at all ( have you had the ambry testing?) but are only a carrier (hence why you haven't had any other symptoms). I don't know the rest of your story, so I don't know if this would apply.

 

[wanderlost]

<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>


It was my understadning that some male carriers can actually have the absent vas deferns as well - meaning that maybe you don't have Cf at all ( have you had the ambry testing?) but are only a carrier (hence why you haven't had any other symptoms). I don't know the rest of your story, so I don't know if this would apply.

 

[wanderlost]

<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>


It was my understadning that some male carriers can actually have the absent vas deferns as well - meaning that maybe you don't have Cf at all ( have you had the ambry testing?) but are only a carrier (hence why you haven't had any other symptoms). I don't know the rest of your story, so I don't know if this would apply.

 

[wanderlost]

<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>


It was my understadning that some male carriers can actually have the absent vas deferns as well - meaning that maybe you don't have Cf at all ( have you had the ambry testing?) but are only a carrier (hence why you haven't had any other symptoms). I don't know the rest of your story, so I don't know if this would apply.

 

[welshwitch]

Well, this is an interesting topic and one that I struggle w/ as well. I'm constantly conflicted w/ the notion that CF is a spectrum. Or is it?

I just read "The Power of Two: A Twin Triumph over Cystic Fibrosis " by Isa and Ana (I'm blanking on their last names). A great read. But I digress....

On one hand I was blown away at the severity (to me) of their disease. The frequent hospitalizations, the IVs, the Ports, missing weeks of school at a time. I have never experienced that.

On the other hand I could completely relate to a lot of aspects of their CF experience, with enzymes, Dr visits, their family dynamics and the way they dealt with relationships and the fear that their boyfriends would leave when things got too hard.

So, even though the physical aspects may be occuring at a different rate or in different ways, the day to day stuff as well as the emotional stress is universal. No one likes being told they're going to die early. However, there is a difference between denial (refusing to deal) and rising to the occasion to handle the situation the best way you know how at the time.

 

[welshwitch]

Well, this is an interesting topic and one that I struggle w/ as well. I'm constantly conflicted w/ the notion that CF is a spectrum. Or is it?

I just read "The Power of Two: A Twin Triumph over Cystic Fibrosis " by Isa and Ana (I'm blanking on their last names). A great read. But I digress....

On one hand I was blown away at the severity (to me) of their disease. The frequent hospitalizations, the IVs, the Ports, missing weeks of school at a time. I have never experienced that.

On the other hand I could completely relate to a lot of aspects of their CF experience, with enzymes, Dr visits, their family dynamics and the way they dealt with relationships and the fear that their boyfriends would leave when things got too hard.

So, even though the physical aspects may be occuring at a different rate or in different ways, the day to day stuff as well as the emotional stress is universal. No one likes being told they're going to die early. However, there is a difference between denial (refusing to deal) and rising to the occasion to handle the situation the best way you know how at the time.

 

[welshwitch]

Well, this is an interesting topic and one that I struggle w/ as well. I'm constantly conflicted w/ the notion that CF is a spectrum. Or is it?

I just read "The Power of Two: A Twin Triumph over Cystic Fibrosis " by Isa and Ana (I'm blanking on their last names). A great read. But I digress....

On one hand I was blown away at the severity (to me) of their disease. The frequent hospitalizations, the IVs, the Ports, missing weeks of school at a time. I have never experienced that.

On the other hand I could completely relate to a lot of aspects of their CF experience, with enzymes, Dr visits, their family dynamics and the way they dealt with relationships and the fear that their boyfriends would leave when things got too hard.

So, even though the physical aspects may be occuring at a different rate or in different ways, the day to day stuff as well as the emotional stress is universal. No one likes being told they're going to die early. However, there is a difference between denial (refusing to deal) and rising to the occasion to handle the situation the best way you know how at the time.

 

[welshwitch]

Well, this is an interesting topic and one that I struggle w/ as well. I'm constantly conflicted w/ the notion that CF is a spectrum. Or is it?

I just read "The Power of Two: A Twin Triumph over Cystic Fibrosis " by Isa and Ana (I'm blanking on their last names). A great read. But I digress....

On one hand I was blown away at the severity (to me) of their disease. The frequent hospitalizations, the IVs, the Ports, missing weeks of school at a time. I have never experienced that.

On the other hand I could completely relate to a lot of aspects of their CF experience, with enzymes, Dr visits, their family dynamics and the way they dealt with relationships and the fear that their boyfriends would leave when things got too hard.

So, even though the physical aspects may be occuring at a different rate or in different ways, the day to day stuff as well as the emotional stress is universal. No one likes being told they're going to die early. However, there is a difference between denial (refusing to deal) and rising to the occasion to handle the situation the best way you know how at the time.

 

[welshwitch]

Well, this is an interesting topic and one that I struggle w/ as well. I'm constantly conflicted w/ the notion that CF is a spectrum. Or is it?

I just read "The Power of Two: A Twin Triumph over Cystic Fibrosis " by Isa and Ana (I'm blanking on their last names). A great read. But I digress....

On one hand I was blown away at the severity (to me) of their disease. The frequent hospitalizations, the IVs, the Ports, missing weeks of school at a time. I have never experienced that.

On the other hand I could completely relate to a lot of aspects of their CF experience, with enzymes, Dr visits, their family dynamics and the way they dealt with relationships and the fear that their boyfriends would leave when things got too hard.

So, even though the physical aspects may be occuring at a different rate or in different ways, the day to day stuff as well as the emotional stress is universal. No one likes being told they're going to die early. However, there is a difference between denial (refusing to deal) and rising to the occasion to handle the situation the best way you know how at the time.

 

[Pianist]

Here's how I see it. There are multiple medications that are potential cures in phase II and phase III trials. Researchers say that they are realistically within 8 years of a cure. All we have to do is hold out till then and then we're home free. Once our CF is gone the world will have some tough SOBs to reckon with ;^)

 

[Pianist]

Here's how I see it. There are multiple medications that are potential cures in phase II and phase III trials. Researchers say that they are realistically within 8 years of a cure. All we have to do is hold out till then and then we're home free. Once our CF is gone the world will have some tough SOBs to reckon with ;^)

 

[Pianist]

Here's how I see it. There are multiple medications that are potential cures in phase II and phase III trials. Researchers say that they are realistically within 8 years of a cure. All we have to do is hold out till then and then we're home free. Once our CF is gone the world will have some tough SOBs to reckon with ;^)

 

[Pianist]

Here's how I see it. There are multiple medications that are potential cures in phase II and phase III trials. Researchers say that they are realistically within 8 years of a cure. All we have to do is hold out till then and then we're home free. Once our CF is gone the world will have some tough SOBs to reckon with ;^)

 

[Pianist]

Here's how I see it. There are multiple medications that are potential cures in phase II and phase III trials. Researchers say that they are realistically within 8 years of a cure. All we have to do is hold out till then and then we're home free. Once our CF is gone the world will have some tough SOBs to reckon with ;^)

 

[AnnaH]

<div class="FTQUOTE"><begin quote>Researchers say that they are realistically within 8 years of a cure. All we have to do is hold out till then and then we're home free. </end quote></div>
Hate to say it, but the cure has been "within reach" or "less than ten years away" forever. I have a 40 year old friend w/cf, and her parents were told that when she was born. They told my parents that 17 years ago- and while lots of progress has been made, nothing that is a total cure. I wouldn't hold my breath.
I'll get exited when I can actually, personally take this cure.

I agree that most atypical CF is just mild and progressing slower than normal. I'm sure real atypical does exist- but not in the numbers that people seem to belive.

 

[AnnaH]

<div class="FTQUOTE"><begin quote>Researchers say that they are realistically within 8 years of a cure. All we have to do is hold out till then and then we're home free. </end quote></div>
Hate to say it, but the cure has been "within reach" or "less than ten years away" forever. I have a 40 year old friend w/cf, and her parents were told that when she was born. They told my parents that 17 years ago- and while lots of progress has been made, nothing that is a total cure. I wouldn't hold my breath.
I'll get exited when I can actually, personally take this cure.

I agree that most atypical CF is just mild and progressing slower than normal. I'm sure real atypical does exist- but not in the numbers that people seem to belive.

 

[AnnaH]

<div class="FTQUOTE"><begin quote>Researchers say that they are realistically within 8 years of a cure. All we have to do is hold out till then and then we're home free. </end quote></div>
Hate to say it, but the cure has been "within reach" or "less than ten years away" forever. I have a 40 year old friend w/cf, and her parents were told that when she was born. They told my parents that 17 years ago- and while lots of progress has been made, nothing that is a total cure. I wouldn't hold my breath.
I'll get exited when I can actually, personally take this cure.

I agree that most atypical CF is just mild and progressing slower than normal. I'm sure real atypical does exist- but not in the numbers that people seem to belive.

 

[AnnaH]

<div class="FTQUOTE"><begin quote>Researchers say that they are realistically within 8 years of a cure. All we have to do is hold out till then and then we're home free. </end quote>
Hate to say it, but the cure has been "within reach" or "less than ten years away" forever. I have a 40 year old friend w/cf, and her parents were told that when she was born. They told my parents that 17 years ago- and while lots of progress has been made, nothing that is a total cure. I wouldn't hold my breath.
I'll get exited when I can actually, personally take this cure.

I agree that most atypical CF is just mild and progressing slower than normal. I'm sure real atypical does exist- but not in the numbers that people seem to belive.

 

[AnnaH]

<div class="FTQUOTE"><begin quote>Researchers say that they are realistically within 8 years of a cure. All we have to do is hold out till then and then we're home free. </end quote>
Hate to say it, but the cure has been "within reach" or "less than ten years away" forever. I have a 40 year old friend w/cf, and her parents were told that when she was born. They told my parents that 17 years ago- and while lots of progress has been made, nothing that is a total cure. I wouldn't hold my breath.
I'll get exited when I can actually, personally take this cure.

I agree that most atypical CF is just mild and progressing slower than normal. I'm sure real atypical does exist- but not in the numbers that people seem to belive.