Resources for atypical cases

[NoExcuses]

just through i would reiterate

no two cases of CF are the same.

ever.

i think doctors who diagnose a-typical CF are irresponsible. (not saying that your doctor told you this). it seems to give many CF parents license to not be proactive about their child's care because they seem to think that their children won't ever get sick or symptoms will only need to be treated as they arise.

every person with CF deserves pro-active treatment (read: treatment before symptoms arise....so as to prolong symptoms from arising.... thereby prolonging life).

i have seen too many times parents using this denial mechanism and it harms the child.


Edited to add: I'm 26 and I have only had IV's 6 times in my life. My FEV1 is 95%. I just had to lose 8 lbs because I was carrying around extra fat.

Do I have atypical CF? Absolutely not. I have CF just like the other 50,000 people on this planet have CF. Mine is different or the same.

 

[NoExcuses]

just through i would reiterate

no two cases of CF are the same.

ever.

i think doctors who diagnose a-typical CF are irresponsible. (not saying that your doctor told you this). it seems to give many CF parents license to not be proactive about their child's care because they seem to think that their children won't ever get sick or symptoms will only need to be treated as they arise.

every person with CF deserves pro-active treatment (read: treatment before symptoms arise....so as to prolong symptoms from arising.... thereby prolonging life).

i have seen too many times parents using this denial mechanism and it harms the child.


Edited to add: I'm 26 and I have only had IV's 6 times in my life. My FEV1 is 95%. I just had to lose 8 lbs because I was carrying around extra fat.

Do I have atypical CF? Absolutely not. I have CF just like the other 50,000 people on this planet have CF. Mine is different or the same.

 

[NoExcuses]

just through i would reiterate

no two cases of CF are the same.

ever.

i think doctors who diagnose a-typical CF are irresponsible. (not saying that your doctor told you this). it seems to give many CF parents license to not be proactive about their child's care because they seem to think that their children won't ever get sick or symptoms will only need to be treated as they arise.

every person with CF deserves pro-active treatment (read: treatment before symptoms arise....so as to prolong symptoms from arising.... thereby prolonging life).

i have seen too many times parents using this denial mechanism and it harms the child.


Edited to add: I'm 26 and I have only had IV's 6 times in my life. My FEV1 is 95%. I just had to lose 8 lbs because I was carrying around extra fat.

Do I have atypical CF? Absolutely not. I have CF just like the other 50,000 people on this planet have CF. Mine is different or the same.

 

[NoExcuses]

just through i would reiterate

no two cases of CF are the same.

ever.

i think doctors who diagnose a-typical CF are irresponsible. (not saying that your doctor told you this). it seems to give many CF parents license to not be proactive about their child's care because they seem to think that their children won't ever get sick or symptoms will only need to be treated as they arise.

every person with CF deserves pro-active treatment (read: treatment before symptoms arise....so as to prolong symptoms from arising.... thereby prolonging life).

i have seen too many times parents using this denial mechanism and it harms the child.


Edited to add: I'm 26 and I have only had IV's 6 times in my life. My FEV1 is 95%. I just had to lose 8 lbs because I was carrying around extra fat.

Do I have atypical CF? Absolutely not. I have CF just like the other 50,000 people on this planet have CF. Mine is different or the same.

 

[NoExcuses]

just through i would reiterate

no two cases of CF are the same.

ever.

i think doctors who diagnose a-typical CF are irresponsible. (not saying that your doctor told you this). it seems to give many CF parents license to not be proactive about their child's care because they seem to think that their children won't ever get sick or symptoms will only need to be treated as they arise.

every person with CF deserves pro-active treatment (read: treatment before symptoms arise....so as to prolong symptoms from arising.... thereby prolonging life).

i have seen too many times parents using this denial mechanism and it harms the child.


Edited to add: I'm 26 and I have only had IV's 6 times in my life. My FEV1 is 95%. I just had to lose 8 lbs because I was carrying around extra fat.

Do I have atypical CF? Absolutely not. I have CF just like the other 50,000 people on this planet have CF. Mine is different or the same.

 

[Pianist]

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."

 

[Pianist]

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."

 

[Pianist]

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."

 

[Pianist]

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."

 

[Pianist]

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."

 

[hopesiris]

Amy,

Just for the record, my CF doc explained my diagnosis well. She let me know that my CFTR malfunction is not as severe as typical CF. She did put me on airway clearance treatments immediately upon diagnosis. I have no lung damage yet but I have a vest, flutter, albuterol and HTS. She has let me know that we need to keep my lungs free of damage for as long as possible, but makes it clear that eventually I will develop it.

I suspect that it may not always be what the doctors are telling parents, but the parents denial. You know what it is with motherhood- you just can't imagine burying your child. If those moms with mild CF kids acknowledge the illness fully, they have to face the fact that they may outlive their child. For a mother, that is unthinkable. Your child is a part of your heart, your most precious love.

 

[hopesiris]

Amy,

Just for the record, my CF doc explained my diagnosis well. She let me know that my CFTR malfunction is not as severe as typical CF. She did put me on airway clearance treatments immediately upon diagnosis. I have no lung damage yet but I have a vest, flutter, albuterol and HTS. She has let me know that we need to keep my lungs free of damage for as long as possible, but makes it clear that eventually I will develop it.

I suspect that it may not always be what the doctors are telling parents, but the parents denial. You know what it is with motherhood- you just can't imagine burying your child. If those moms with mild CF kids acknowledge the illness fully, they have to face the fact that they may outlive their child. For a mother, that is unthinkable. Your child is a part of your heart, your most precious love.

 

[hopesiris]

Amy,

Just for the record, my CF doc explained my diagnosis well. She let me know that my CFTR malfunction is not as severe as typical CF. She did put me on airway clearance treatments immediately upon diagnosis. I have no lung damage yet but I have a vest, flutter, albuterol and HTS. She has let me know that we need to keep my lungs free of damage for as long as possible, but makes it clear that eventually I will develop it.

I suspect that it may not always be what the doctors are telling parents, but the parents denial. You know what it is with motherhood- you just can't imagine burying your child. If those moms with mild CF kids acknowledge the illness fully, they have to face the fact that they may outlive their child. For a mother, that is unthinkable. Your child is a part of your heart, your most precious love.

 

[hopesiris]

Amy,

Just for the record, my CF doc explained my diagnosis well. She let me know that my CFTR malfunction is not as severe as typical CF. She did put me on airway clearance treatments immediately upon diagnosis. I have no lung damage yet but I have a vest, flutter, albuterol and HTS. She has let me know that we need to keep my lungs free of damage for as long as possible, but makes it clear that eventually I will develop it.

I suspect that it may not always be what the doctors are telling parents, but the parents denial. You know what it is with motherhood- you just can't imagine burying your child. If those moms with mild CF kids acknowledge the illness fully, they have to face the fact that they may outlive their child. For a mother, that is unthinkable. Your child is a part of your heart, your most precious love.

 

[hopesiris]

Amy,

Just for the record, my CF doc explained my diagnosis well. She let me know that my CFTR malfunction is not as severe as typical CF. She did put me on airway clearance treatments immediately upon diagnosis. I have no lung damage yet but I have a vest, flutter, albuterol and HTS. She has let me know that we need to keep my lungs free of damage for as long as possible, but makes it clear that eventually I will develop it.

I suspect that it may not always be what the doctors are telling parents, but the parents denial. You know what it is with motherhood- you just can't imagine burying your child. If those moms with mild CF kids acknowledge the illness fully, they have to face the fact that they may outlive their child. For a mother, that is unthinkable. Your child is a part of your heart, your most precious love.

 

[peanut07]

I think when you have men finding out in their 30's or 40's thanks to infertility due to CBAVD with no other clinical presentation that would be considered A Typical.


CF isn't black and white. It is a spectrum disorder and as more is learned about the many presentations of this disease, treatment will be individualized to reflect that.

 

[peanut07]

I think when you have men finding out in their 30's or 40's thanks to infertility due to CBAVD with no other clinical presentation that would be considered A Typical.


CF isn't black and white. It is a spectrum disorder and as more is learned about the many presentations of this disease, treatment will be individualized to reflect that.

 

[peanut07]

I think when you have men finding out in their 30's or 40's thanks to infertility due to CBAVD with no other clinical presentation that would be considered A Typical.


CF isn't black and white. It is a spectrum disorder and as more is learned about the many presentations of this disease, treatment will be individualized to reflect that.

 

[peanut07]

I think when you have men finding out in their 30's or 40's thanks to infertility due to CBAVD with no other clinical presentation that would be considered A Typical.


CF isn't black and white. It is a spectrum disorder and as more is learned about the many presentations of this disease, treatment will be individualized to reflect that.

 

[peanut07]

I think when you have men finding out in their 30's or 40's thanks to infertility due to CBAVD with no other clinical presentation that would be considered A Typical.


CF isn't black and white. It is a spectrum disorder and as more is learned about the many presentations of this disease, treatment will be individualized to reflect that.