Have you ever had to "prove" you had CF?

[wanderlost]

Anyone ever had to argue or prove they had CF?

When my son was a baby he developed meningitis and spent 5 weeks in the hospital. The doctors caring for him asked me numerous times if I was *sure* I had CF....finally I told them my mutations and they left me alone. As grateful as I am to be healthy-looking, it was really annoying. Who on earth would run around pretending or live 22 (how old I was then) years that severely misdiagnosed (oh jeez, I don't have CF - you mean this cough is curable?? )?!?

 

[wanderlost]

Anyone ever had to argue or prove they had CF?

When my son was a baby he developed meningitis and spent 5 weeks in the hospital. The doctors caring for him asked me numerous times if I was *sure* I had CF....finally I told them my mutations and they left me alone. As grateful as I am to be healthy-looking, it was really annoying. Who on earth would run around pretending or live 22 (how old I was then) years that severely misdiagnosed (oh jeez, I don't have CF - you mean this cough is curable?? )?!?

 

[wanderlost]

Anyone ever had to argue or prove they had CF?

When my son was a baby he developed meningitis and spent 5 weeks in the hospital. The doctors caring for him asked me numerous times if I was *sure* I had CF....finally I told them my mutations and they left me alone. As grateful as I am to be healthy-looking, it was really annoying. Who on earth would run around pretending or live 22 (how old I was then) years that severely misdiagnosed (oh jeez, I don't have CF - you mean this cough is curable?? )?!?

 

[blindhearted]

Have you ever had to "prove

i've never had to prove it to ppl by tell my mutations. But I have often had the common: "well you look healthy", "You dont look like anything is wrong", "you look normal" (i hate that last one). But I had the hardest time in High School (and these were ppl i've been to school with since i was 5). I even had my "best" friend tell me IN the hospital (when she visited me) that I was doing this all for attention. I wasnt really sick. I was hooked to an IV machine with a needle in my side (port)...yes, I have nothing better to do with my time moron. She didnt stay my best friend for long after that, specially once I found out she told the rest of the class this little idea, so that was fun to return to. But I got a lot of crap from my peers cause I didnt look sick and have had to argue it.

 

[blindhearted]

Have you ever had to "prove

i've never had to prove it to ppl by tell my mutations. But I have often had the common: "well you look healthy", "You dont look like anything is wrong", "you look normal" (i hate that last one). But I had the hardest time in High School (and these were ppl i've been to school with since i was 5). I even had my "best" friend tell me IN the hospital (when she visited me) that I was doing this all for attention. I wasnt really sick. I was hooked to an IV machine with a needle in my side (port)...yes, I have nothing better to do with my time moron. She didnt stay my best friend for long after that, specially once I found out she told the rest of the class this little idea, so that was fun to return to. But I got a lot of crap from my peers cause I didnt look sick and have had to argue it.

 

[blindhearted]

Have you ever had to "prove

i've never had to prove it to ppl by tell my mutations. But I have often had the common: "well you look healthy", "You dont look like anything is wrong", "you look normal" (i hate that last one). But I had the hardest time in High School (and these were ppl i've been to school with since i was 5). I even had my "best" friend tell me IN the hospital (when she visited me) that I was doing this all for attention. I wasnt really sick. I was hooked to an IV machine with a needle in my side (port)...yes, I have nothing better to do with my time moron. She didnt stay my best friend for long after that, specially once I found out she told the rest of the class this little idea, so that was fun to return to. But I got a lot of crap from my peers cause I didnt look sick and have had to argue it.

 

[JennifersHope]

Have you ever had to "prove

I have heard a lot say that "I don't look like a CFer" .. I am overweight from the steroids I take and I have a moonface and bloated belly.. Also a few people have told me my cough sounds more like asthma then a CF cough....

I usually am though the one telling people that my CF is mild and that I am not a typical CFer.

 

[JennifersHope]

Have you ever had to "prove

I have heard a lot say that "I don't look like a CFer" .. I am overweight from the steroids I take and I have a moonface and bloated belly.. Also a few people have told me my cough sounds more like asthma then a CF cough....

I usually am though the one telling people that my CF is mild and that I am not a typical CFer.

 

[JennifersHope]

Have you ever had to "prove

I have heard a lot say that "I don't look like a CFer" .. I am overweight from the steroids I take and I have a moonface and bloated belly.. Also a few people have told me my cough sounds more like asthma then a CF cough....

I usually am though the one telling people that my CF is mild and that I am not a typical CFer.

 

[EnergyGal]

Have you ever had to "prove

I was born in 1959, growing up many people with CF did not live long. I saw all my friends with cf who looked sickly. Many of the mutations today were not recognized and for people who had mild cf they went on without a diagnosis. My parents were told that I would probably not live to the age of eight.

I only met one lady who did not look sick and she inspired me to gain twenty pounds in a year. We did not have the internet back then and the only exposure to CF patients were in the hospital and they did not look well. I was all alone in the cf world with friends until I turned eighteen. There is always a face with any disease but CF is a disease as you all know that is disguised. Sorry if my comment offended anyone but i come from the old school of Cf.

edited to add: getting back to the orignial question. I have been told that I do not look sick even when I was waiting for my transplant. You know I do not believe people too often. People tend to want to make you feel good. Especially if you meet someone for the first time and you only know them for a few weeks and then you tell them you have an illness.

You really cannot see CF only others with a trained ear and one who knows CF well. My nurse once said, "I can always tell when someone has Cf" I have to admit I did not like hearing that comment but today, I understand. No big deal.

 

[EnergyGal]

Have you ever had to "prove

I was born in 1959, growing up many people with CF did not live long. I saw all my friends with cf who looked sickly. Many of the mutations today were not recognized and for people who had mild cf they went on without a diagnosis. My parents were told that I would probably not live to the age of eight.

I only met one lady who did not look sick and she inspired me to gain twenty pounds in a year. We did not have the internet back then and the only exposure to CF patients were in the hospital and they did not look well. I was all alone in the cf world with friends until I turned eighteen. There is always a face with any disease but CF is a disease as you all know that is disguised. Sorry if my comment offended anyone but i come from the old school of Cf.

edited to add: getting back to the orignial question. I have been told that I do not look sick even when I was waiting for my transplant. You know I do not believe people too often. People tend to want to make you feel good. Especially if you meet someone for the first time and you only know them for a few weeks and then you tell them you have an illness.

You really cannot see CF only others with a trained ear and one who knows CF well. My nurse once said, "I can always tell when someone has Cf" I have to admit I did not like hearing that comment but today, I understand. No big deal.

 

[EnergyGal]

Have you ever had to "prove

I was born in 1959, growing up many people with CF did not live long. I saw all my friends with cf who looked sickly. Many of the mutations today were not recognized and for people who had mild cf they went on without a diagnosis. My parents were told that I would probably not live to the age of eight.

I only met one lady who did not look sick and she inspired me to gain twenty pounds in a year. We did not have the internet back then and the only exposure to CF patients were in the hospital and they did not look well. I was all alone in the cf world with friends until I turned eighteen. There is always a face with any disease but CF is a disease as you all know that is disguised. Sorry if my comment offended anyone but i come from the old school of Cf.

edited to add: getting back to the orignial question. I have been told that I do not look sick even when I was waiting for my transplant. You know I do not believe people too often. People tend to want to make you feel good. Especially if you meet someone for the first time and you only know them for a few weeks and then you tell them you have an illness.

You really cannot see CF only others with a trained ear and one who knows CF well. My nurse once said, "I can always tell when someone has Cf" I have to admit I did not like hearing that comment but today, I understand. No big deal.

 

[NoExcuses]

Have you ever had to

many of my customers (both primary care docs and physicians) don't believe i have CF. after they get to know me, the realize what they thought was a cold isn't going away and i'm still coughing months after they've met her. so they ask what's up. of course i tell them and they think i'm joking.

all it takes is offering for them to lick my forhead (no one has taken me up on it yet) or describing the meds i'm on <img src="i/expressions/face-icon-small-smile.gif" border="0">

most of my docs are in their 40s & 50s and haven't heard about CF since the 70s or 80s. as we all know, back then, being who i am today wasn't common. so it's not really a matter of proving anything to them, but rather getting them up to date <img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[NoExcuses]

Have you ever had to

many of my customers (both primary care docs and physicians) don't believe i have CF. after they get to know me, the realize what they thought was a cold isn't going away and i'm still coughing months after they've met her. so they ask what's up. of course i tell them and they think i'm joking.

all it takes is offering for them to lick my forhead (no one has taken me up on it yet) or describing the meds i'm on <img src="i/expressions/face-icon-small-smile.gif" border="0">

most of my docs are in their 40s & 50s and haven't heard about CF since the 70s or 80s. as we all know, back then, being who i am today wasn't common. so it's not really a matter of proving anything to them, but rather getting them up to date <img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[NoExcuses]

Have you ever had to

many of my customers (both primary care docs and physicians) don't believe i have CF. after they get to know me, the realize what they thought was a cold isn't going away and i'm still coughing months after they've met her. so they ask what's up. of course i tell them and they think i'm joking.

all it takes is offering for them to lick my forhead (no one has taken me up on it yet) or describing the meds i'm on <img src="i/expressions/face-icon-small-smile.gif" border="0">

most of my docs are in their 40s & 50s and haven't heard about CF since the 70s or 80s. as we all know, back then, being who i am today wasn't common. so it's not really a matter of proving anything to them, but rather getting them up to date <img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[princessjdc]

Have you ever had to

I was born in 1980 and my doctor had told my parents that I would not live to eight like was Risa had said. I was a really sick baby then so it probably seemed reasonable that I could of died, but I got better proved the doctor wrong. The doc would always say after passing eight then it would go something well now she has until 16 and so on and so forth.... Other than the doc giving my parents those type of lines I never had to prove to someone I had CF.

 

[princessjdc]

Have you ever had to

I was born in 1980 and my doctor had told my parents that I would not live to eight like was Risa had said. I was a really sick baby then so it probably seemed reasonable that I could of died, but I got better proved the doctor wrong. The doc would always say after passing eight then it would go something well now she has until 16 and so on and so forth.... Other than the doc giving my parents those type of lines I never had to prove to someone I had CF.

 

[princessjdc]

Have you ever had to

I was born in 1980 and my doctor had told my parents that I would not live to eight like was Risa had said. I was a really sick baby then so it probably seemed reasonable that I could of died, but I got better proved the doctor wrong. The doc would always say after passing eight then it would go something well now she has until 16 and so on and so forth.... Other than the doc giving my parents those type of lines I never had to prove to someone I had CF.

 

[Jason]

Have you ever had to

Yes I have had to prove it, not tO DOC'S but to others with cf, because I am 198lbs of mscle and all the people on here said i was faking it. It sucks

 

[Jason]

Have you ever had to

Yes I have had to prove it, not tO DOC'S but to others with cf, because I am 198lbs of mscle and all the people on here said i was faking it. It sucks