I think there are thousands of adults out there that have CF and don't know it and their doctor doesn't even think to test for it because they think it is a childhood disease. I can think of at least three people I know that in the back of my mind I keep thinking do they have CF and just don't know it yet? At least now the newborn screenings are catching more kiddos that would have been overlooked before.
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adult diagnosis
- Thread starter mmac
- Start date
I think there are thousands of adults out there that have CF and don't know it and their doctor doesn't even think to test for it because they think it is a childhood disease. I can think of at least three people I know that in the back of my mind I keep thinking do they have CF and just don't know it yet? At least now the newborn screenings are catching more kiddos that would have been overlooked before.
I think there are thousands of adults out there that have CF and don't know it and their doctor doesn't even think to test for it because they think it is a childhood disease. I can think of at least three people I know that in the back of my mind I keep thinking do they have CF and just don't know it yet? At least now the newborn screenings are catching more kiddos that would have been overlooked before.
I think there are thousands of adults out there that have CF and don't know it and their doctor doesn't even think to test for it because they think it is a childhood disease. I can think of at least three people I know that in the back of my mind I keep thinking do they have CF and just don't know it yet? At least now the newborn screenings are catching more kiddos that would have been overlooked before.
I think there are thousands of adults out there that have CF and don't know it and their doctor doesn't even think to test for it because they think it is a childhood disease. I can think of at least three people I know that in the back of my mind I keep thinking do they have CF and just don't know it yet? At least now the newborn screenings are catching more kiddos that would have been overlooked before.
oldtimer1959
New member
I think Aspiemom may be pretty close to 'hitting the nail onthe head'. I wasn't diagnosed until I was 12 - nearly 13. If you put my 6th, 7th & 8th grade phots side by side, you will question if the girl in the middle is the same - my 7th grade year started out OK, got progressively worse and I lost tons of weight real fast. I am pale and very ill looking in that pic. My parents lost a 4 year old boy in 1954 to 'sudden double pneumonia' so every sniffle I had I was in the doctors office. When I got that sick and a chest x-ray failed to reveal my lower left lobe (huge mucous plug) I was sent to St. Louis where it still took them 2 weeks to figure it out (in 1972) - my sweat tests really confuse them because I'm only a few points over the high. I really think they weren't 100% sure but decided to treat me as a CFer and see what happened. And Lordy! Did I bloom!!!!
I wasn't even sick again until 21 when (now through school and working as an RN in ICU) I picked up my psuedmonas from a vent patient. Since that time I've had hospitalizations that range from 3 or 4 months between to 10-12 between. Now that genetics have come of age, we know that I have 1 'common' 508 and, when last run, an unidentified mutation.
My best advice - live for the day, take excellent care of yourself, feel blessed that you apparently have a mild form of this disease. Do not let yourself be fooled into 'it's mild I'll be OK' - this is a progressive disease, this is a disease that, even when you care for yourself fairly well, can come up and slap you upside the head when you least expect it to. Educate yourself in the disease process, the treatments and stay involved in a group like this one. It'll help a lot. I'm glad I got back to a 'chat' group. Allow yourself the now and then break down feel sorry day and then, as I told someone else a couple of days ago, belly up to the bar and order another round of life. You're here for a reason and by the greater design (stated as such d/t the variety of faiths we appear to have).
Stay in touch - PM me if you'd like.
Mary
I wasn't even sick again until 21 when (now through school and working as an RN in ICU) I picked up my psuedmonas from a vent patient. Since that time I've had hospitalizations that range from 3 or 4 months between to 10-12 between. Now that genetics have come of age, we know that I have 1 'common' 508 and, when last run, an unidentified mutation.
My best advice - live for the day, take excellent care of yourself, feel blessed that you apparently have a mild form of this disease. Do not let yourself be fooled into 'it's mild I'll be OK' - this is a progressive disease, this is a disease that, even when you care for yourself fairly well, can come up and slap you upside the head when you least expect it to. Educate yourself in the disease process, the treatments and stay involved in a group like this one. It'll help a lot. I'm glad I got back to a 'chat' group. Allow yourself the now and then break down feel sorry day and then, as I told someone else a couple of days ago, belly up to the bar and order another round of life. You're here for a reason and by the greater design (stated as such d/t the variety of faiths we appear to have).
Stay in touch - PM me if you'd like.
Mary
oldtimer1959
New member
I think Aspiemom may be pretty close to 'hitting the nail onthe head'. I wasn't diagnosed until I was 12 - nearly 13. If you put my 6th, 7th & 8th grade phots side by side, you will question if the girl in the middle is the same - my 7th grade year started out OK, got progressively worse and I lost tons of weight real fast. I am pale and very ill looking in that pic. My parents lost a 4 year old boy in 1954 to 'sudden double pneumonia' so every sniffle I had I was in the doctors office. When I got that sick and a chest x-ray failed to reveal my lower left lobe (huge mucous plug) I was sent to St. Louis where it still took them 2 weeks to figure it out (in 1972) - my sweat tests really confuse them because I'm only a few points over the high. I really think they weren't 100% sure but decided to treat me as a CFer and see what happened. And Lordy! Did I bloom!!!!
I wasn't even sick again until 21 when (now through school and working as an RN in ICU) I picked up my psuedmonas from a vent patient. Since that time I've had hospitalizations that range from 3 or 4 months between to 10-12 between. Now that genetics have come of age, we know that I have 1 'common' 508 and, when last run, an unidentified mutation.
My best advice - live for the day, take excellent care of yourself, feel blessed that you apparently have a mild form of this disease. Do not let yourself be fooled into 'it's mild I'll be OK' - this is a progressive disease, this is a disease that, even when you care for yourself fairly well, can come up and slap you upside the head when you least expect it to. Educate yourself in the disease process, the treatments and stay involved in a group like this one. It'll help a lot. I'm glad I got back to a 'chat' group. Allow yourself the now and then break down feel sorry day and then, as I told someone else a couple of days ago, belly up to the bar and order another round of life. You're here for a reason and by the greater design (stated as such d/t the variety of faiths we appear to have).
Stay in touch - PM me if you'd like.
Mary
I wasn't even sick again until 21 when (now through school and working as an RN in ICU) I picked up my psuedmonas from a vent patient. Since that time I've had hospitalizations that range from 3 or 4 months between to 10-12 between. Now that genetics have come of age, we know that I have 1 'common' 508 and, when last run, an unidentified mutation.
My best advice - live for the day, take excellent care of yourself, feel blessed that you apparently have a mild form of this disease. Do not let yourself be fooled into 'it's mild I'll be OK' - this is a progressive disease, this is a disease that, even when you care for yourself fairly well, can come up and slap you upside the head when you least expect it to. Educate yourself in the disease process, the treatments and stay involved in a group like this one. It'll help a lot. I'm glad I got back to a 'chat' group. Allow yourself the now and then break down feel sorry day and then, as I told someone else a couple of days ago, belly up to the bar and order another round of life. You're here for a reason and by the greater design (stated as such d/t the variety of faiths we appear to have).
Stay in touch - PM me if you'd like.
Mary
oldtimer1959
New member
I think Aspiemom may be pretty close to 'hitting the nail onthe head'. I wasn't diagnosed until I was 12 - nearly 13. If you put my 6th, 7th & 8th grade phots side by side, you will question if the girl in the middle is the same - my 7th grade year started out OK, got progressively worse and I lost tons of weight real fast. I am pale and very ill looking in that pic. My parents lost a 4 year old boy in 1954 to 'sudden double pneumonia' so every sniffle I had I was in the doctors office. When I got that sick and a chest x-ray failed to reveal my lower left lobe (huge mucous plug) I was sent to St. Louis where it still took them 2 weeks to figure it out (in 1972) - my sweat tests really confuse them because I'm only a few points over the high. I really think they weren't 100% sure but decided to treat me as a CFer and see what happened. And Lordy! Did I bloom!!!!
I wasn't even sick again until 21 when (now through school and working as an RN in ICU) I picked up my psuedmonas from a vent patient. Since that time I've had hospitalizations that range from 3 or 4 months between to 10-12 between. Now that genetics have come of age, we know that I have 1 'common' 508 and, when last run, an unidentified mutation.
My best advice - live for the day, take excellent care of yourself, feel blessed that you apparently have a mild form of this disease. Do not let yourself be fooled into 'it's mild I'll be OK' - this is a progressive disease, this is a disease that, even when you care for yourself fairly well, can come up and slap you upside the head when you least expect it to. Educate yourself in the disease process, the treatments and stay involved in a group like this one. It'll help a lot. I'm glad I got back to a 'chat' group. Allow yourself the now and then break down feel sorry day and then, as I told someone else a couple of days ago, belly up to the bar and order another round of life. You're here for a reason and by the greater design (stated as such d/t the variety of faiths we appear to have).
Stay in touch - PM me if you'd like.
Mary
I wasn't even sick again until 21 when (now through school and working as an RN in ICU) I picked up my psuedmonas from a vent patient. Since that time I've had hospitalizations that range from 3 or 4 months between to 10-12 between. Now that genetics have come of age, we know that I have 1 'common' 508 and, when last run, an unidentified mutation.
My best advice - live for the day, take excellent care of yourself, feel blessed that you apparently have a mild form of this disease. Do not let yourself be fooled into 'it's mild I'll be OK' - this is a progressive disease, this is a disease that, even when you care for yourself fairly well, can come up and slap you upside the head when you least expect it to. Educate yourself in the disease process, the treatments and stay involved in a group like this one. It'll help a lot. I'm glad I got back to a 'chat' group. Allow yourself the now and then break down feel sorry day and then, as I told someone else a couple of days ago, belly up to the bar and order another round of life. You're here for a reason and by the greater design (stated as such d/t the variety of faiths we appear to have).
Stay in touch - PM me if you'd like.
Mary
oldtimer1959
New member
I think Aspiemom may be pretty close to 'hitting the nail onthe head'. I wasn't diagnosed until I was 12 - nearly 13. If you put my 6th, 7th & 8th grade phots side by side, you will question if the girl in the middle is the same - my 7th grade year started out OK, got progressively worse and I lost tons of weight real fast. I am pale and very ill looking in that pic. My parents lost a 4 year old boy in 1954 to 'sudden double pneumonia' so every sniffle I had I was in the doctors office. When I got that sick and a chest x-ray failed to reveal my lower left lobe (huge mucous plug) I was sent to St. Louis where it still took them 2 weeks to figure it out (in 1972) - my sweat tests really confuse them because I'm only a few points over the high. I really think they weren't 100% sure but decided to treat me as a CFer and see what happened. And Lordy! Did I bloom!!!!
I wasn't even sick again until 21 when (now through school and working as an RN in ICU) I picked up my psuedmonas from a vent patient. Since that time I've had hospitalizations that range from 3 or 4 months between to 10-12 between. Now that genetics have come of age, we know that I have 1 'common' 508 and, when last run, an unidentified mutation.
My best advice - live for the day, take excellent care of yourself, feel blessed that you apparently have a mild form of this disease. Do not let yourself be fooled into 'it's mild I'll be OK' - this is a progressive disease, this is a disease that, even when you care for yourself fairly well, can come up and slap you upside the head when you least expect it to. Educate yourself in the disease process, the treatments and stay involved in a group like this one. It'll help a lot. I'm glad I got back to a 'chat' group. Allow yourself the now and then break down feel sorry day and then, as I told someone else a couple of days ago, belly up to the bar and order another round of life. You're here for a reason and by the greater design (stated as such d/t the variety of faiths we appear to have).
Stay in touch - PM me if you'd like.
Mary
I wasn't even sick again until 21 when (now through school and working as an RN in ICU) I picked up my psuedmonas from a vent patient. Since that time I've had hospitalizations that range from 3 or 4 months between to 10-12 between. Now that genetics have come of age, we know that I have 1 'common' 508 and, when last run, an unidentified mutation.
My best advice - live for the day, take excellent care of yourself, feel blessed that you apparently have a mild form of this disease. Do not let yourself be fooled into 'it's mild I'll be OK' - this is a progressive disease, this is a disease that, even when you care for yourself fairly well, can come up and slap you upside the head when you least expect it to. Educate yourself in the disease process, the treatments and stay involved in a group like this one. It'll help a lot. I'm glad I got back to a 'chat' group. Allow yourself the now and then break down feel sorry day and then, as I told someone else a couple of days ago, belly up to the bar and order another round of life. You're here for a reason and by the greater design (stated as such d/t the variety of faiths we appear to have).
Stay in touch - PM me if you'd like.
Mary
oldtimer1959
New member
I think Aspiemom may be pretty close to 'hitting the nail onthe head'. I wasn't diagnosed until I was 12 - nearly 13. If you put my 6th, 7th & 8th grade phots side by side, you will question if the girl in the middle is the same - my 7th grade year started out OK, got progressively worse and I lost tons of weight real fast. I am pale and very ill looking in that pic. My parents lost a 4 year old boy in 1954 to 'sudden double pneumonia' so every sniffle I had I was in the doctors office. When I got that sick and a chest x-ray failed to reveal my lower left lobe (huge mucous plug) I was sent to St. Louis where it still took them 2 weeks to figure it out (in 1972) - my sweat tests really confuse them because I'm only a few points over the high. I really think they weren't 100% sure but decided to treat me as a CFer and see what happened. And Lordy! Did I bloom!!!!
I wasn't even sick again until 21 when (now through school and working as an RN in ICU) I picked up my psuedmonas from a vent patient. Since that time I've had hospitalizations that range from 3 or 4 months between to 10-12 between. Now that genetics have come of age, we know that I have 1 'common' 508 and, when last run, an unidentified mutation.
My best advice - live for the day, take excellent care of yourself, feel blessed that you apparently have a mild form of this disease. Do not let yourself be fooled into 'it's mild I'll be OK' - this is a progressive disease, this is a disease that, even when you care for yourself fairly well, can come up and slap you upside the head when you least expect it to. Educate yourself in the disease process, the treatments and stay involved in a group like this one. It'll help a lot. I'm glad I got back to a 'chat' group. Allow yourself the now and then break down feel sorry day and then, as I told someone else a couple of days ago, belly up to the bar and order another round of life. You're here for a reason and by the greater design (stated as such d/t the variety of faiths we appear to have).
Stay in touch - PM me if you'd like.
Mary
I wasn't even sick again until 21 when (now through school and working as an RN in ICU) I picked up my psuedmonas from a vent patient. Since that time I've had hospitalizations that range from 3 or 4 months between to 10-12 between. Now that genetics have come of age, we know that I have 1 'common' 508 and, when last run, an unidentified mutation.
My best advice - live for the day, take excellent care of yourself, feel blessed that you apparently have a mild form of this disease. Do not let yourself be fooled into 'it's mild I'll be OK' - this is a progressive disease, this is a disease that, even when you care for yourself fairly well, can come up and slap you upside the head when you least expect it to. Educate yourself in the disease process, the treatments and stay involved in a group like this one. It'll help a lot. I'm glad I got back to a 'chat' group. Allow yourself the now and then break down feel sorry day and then, as I told someone else a couple of days ago, belly up to the bar and order another round of life. You're here for a reason and by the greater design (stated as such d/t the variety of faiths we appear to have).
Stay in touch - PM me if you'd like.
Mary
mom2lillian
New member
Hello, adult diagnosis here, I was diagnosed at 21 years of age and am 27 years of age currently. It is not that uncommon any more though the literature has not yet caught up. One of the large reasons it is now being caught is due to infertility doctors being more aware of it as often that will be the only sign someone has. The director of my CF clinic had a son die of the disease as a young child, she was diagnosed about 3 years ago at around 58 years old! Feel free to visit my blog if you are interested or post another question or PM me. I am working with someone else I met at this site and we have created a website specifically for the mutation thta I carry becuase it is generally associated with late diagnosis, mild progression and we are trying to educate doctors regarding this possibility.
take care
take care
mom2lillian
New member
Hello, adult diagnosis here, I was diagnosed at 21 years of age and am 27 years of age currently. It is not that uncommon any more though the literature has not yet caught up. One of the large reasons it is now being caught is due to infertility doctors being more aware of it as often that will be the only sign someone has. The director of my CF clinic had a son die of the disease as a young child, she was diagnosed about 3 years ago at around 58 years old! Feel free to visit my blog if you are interested or post another question or PM me. I am working with someone else I met at this site and we have created a website specifically for the mutation thta I carry becuase it is generally associated with late diagnosis, mild progression and we are trying to educate doctors regarding this possibility.
take care
take care
mom2lillian
New member
Hello, adult diagnosis here, I was diagnosed at 21 years of age and am 27 years of age currently. It is not that uncommon any more though the literature has not yet caught up. One of the large reasons it is now being caught is due to infertility doctors being more aware of it as often that will be the only sign someone has. The director of my CF clinic had a son die of the disease as a young child, she was diagnosed about 3 years ago at around 58 years old! Feel free to visit my blog if you are interested or post another question or PM me. I am working with someone else I met at this site and we have created a website specifically for the mutation thta I carry becuase it is generally associated with late diagnosis, mild progression and we are trying to educate doctors regarding this possibility.
take care
take care
mom2lillian
New member
Hello, adult diagnosis here, I was diagnosed at 21 years of age and am 27 years of age currently. It is not that uncommon any more though the literature has not yet caught up. One of the large reasons it is now being caught is due to infertility doctors being more aware of it as often that will be the only sign someone has. The director of my CF clinic had a son die of the disease as a young child, she was diagnosed about 3 years ago at around 58 years old! Feel free to visit my blog if you are interested or post another question or PM me. I am working with someone else I met at this site and we have created a website specifically for the mutation thta I carry becuase it is generally associated with late diagnosis, mild progression and we are trying to educate doctors regarding this possibility.
take care
take care
mom2lillian
New member
Hello, adult diagnosis here, I was diagnosed at 21 years of age and am 27 years of age currently. It is not that uncommon any more though the literature has not yet caught up. One of the large reasons it is now being caught is due to infertility doctors being more aware of it as often that will be the only sign someone has. The director of my CF clinic had a son die of the disease as a young child, she was diagnosed about 3 years ago at around 58 years old! Feel free to visit my blog if you are interested or post another question or PM me. I am working with someone else I met at this site and we have created a website specifically for the mutation thta I carry becuase it is generally associated with late diagnosis, mild progression and we are trying to educate doctors regarding this possibility.
take care
take care