adult diagnosis

C

CaliSally

New member
I met a woman who wasn't diagnosed until she was in her 50's! She kept returning to the doctor for whatever problem...and while sitting in the waiting room, was reading a magazine, happened upon an article on CF. <img src="i/expressions/face-icon-small-shocked.gif" border="0">
She brought it into the room with her and pointed to it and asked the doctor "do I have CF?" Low and behold, indeed she did.
It's not uncommon for patients to be diagnosed later in life because their symptoms are mild and mimic other problems.
 
C

CaliSally

New member
I met a woman who wasn't diagnosed until she was in her 50's! She kept returning to the doctor for whatever problem...and while sitting in the waiting room, was reading a magazine, happened upon an article on CF. <img src="i/expressions/face-icon-small-shocked.gif" border="0">
She brought it into the room with her and pointed to it and asked the doctor "do I have CF?" Low and behold, indeed she did.
It's not uncommon for patients to be diagnosed later in life because their symptoms are mild and mimic other problems.
 
C

CaliSally

New member
I met a woman who wasn't diagnosed until she was in her 50's! She kept returning to the doctor for whatever problem...and while sitting in the waiting room, was reading a magazine, happened upon an article on CF. <img src="i/expressions/face-icon-small-shocked.gif" border="0">
She brought it into the room with her and pointed to it and asked the doctor "do I have CF?" Low and behold, indeed she did.
It's not uncommon for patients to be diagnosed later in life because their symptoms are mild and mimic other problems.
 
C

CaliSally

New member
I met a woman who wasn't diagnosed until she was in her 50's! She kept returning to the doctor for whatever problem...and while sitting in the waiting room, was reading a magazine, happened upon an article on CF. <img src="i/expressions/face-icon-small-shocked.gif" border="0">
She brought it into the room with her and pointed to it and asked the doctor "do I have CF?" Low and behold, indeed she did.
It's not uncommon for patients to be diagnosed later in life because their symptoms are mild and mimic other problems.
 
C

CaliSally

New member
I met a woman who wasn't diagnosed until she was in her 50's! She kept returning to the doctor for whatever problem...and while sitting in the waiting room, was reading a magazine, happened upon an article on CF. <img src="i/expressions/face-icon-small-shocked.gif" border="0">
She brought it into the room with her and pointed to it and asked the doctor "do I have CF?" Low and behold, indeed she did.
It's not uncommon for patients to be diagnosed later in life because their symptoms are mild and mimic other problems.
 
J

JustDucky

New member
I am an adult dx, dx at 33 yrs old. Why did the docs finally consider CF with you? What did it for me was when I started to grow out B. cepacia. My primary doc scratched her head and did a double take when she saw that on a piece of paper. They repeated my cultures and there it was again. Then she got to thinking...I had a huge weight loss, I don't mean a few lbs either, with alot of digestive issues. When I was younger asthma was a huge problem along with frequent bronchitis and pneumonia that landed me in the hospital about 3 to 4 times a year when I was in my 20's...the docs called it asthmatic exacerbation w/ pneumonia. Because of the persistance of my primary doc, I got sweat tested and genetic screenings done. I am definitely an atypical case.
I believe that because of better diagnostics and the discovery of milder mutations or variants of CF that more and more adults are being diagnosed. In my clinic there was a 54 yr old that was diagnosed after a smart ENT doc suspected CF when this person had a huge sinus history with multiple surgeries. Pulmonary and digestive involvement was nil, mainly her sinuses were affected.
Most CF patients are diagnosed as infants or early childhood. Then there is the small percentage who are diagnosed as teens, early adulthood and then into adulthood.
You have come to a wonderful group with lots of support and understanding. I am sure that other older CF dx's will chime in here.
Many hugs, Jenn <img src="i/expressions/face-icon-small-smile.gif" border="0">
 
J

JustDucky

New member
I am an adult dx, dx at 33 yrs old. Why did the docs finally consider CF with you? What did it for me was when I started to grow out B. cepacia. My primary doc scratched her head and did a double take when she saw that on a piece of paper. They repeated my cultures and there it was again. Then she got to thinking...I had a huge weight loss, I don't mean a few lbs either, with alot of digestive issues. When I was younger asthma was a huge problem along with frequent bronchitis and pneumonia that landed me in the hospital about 3 to 4 times a year when I was in my 20's...the docs called it asthmatic exacerbation w/ pneumonia. Because of the persistance of my primary doc, I got sweat tested and genetic screenings done. I am definitely an atypical case.
I believe that because of better diagnostics and the discovery of milder mutations or variants of CF that more and more adults are being diagnosed. In my clinic there was a 54 yr old that was diagnosed after a smart ENT doc suspected CF when this person had a huge sinus history with multiple surgeries. Pulmonary and digestive involvement was nil, mainly her sinuses were affected.
Most CF patients are diagnosed as infants or early childhood. Then there is the small percentage who are diagnosed as teens, early adulthood and then into adulthood.
You have come to a wonderful group with lots of support and understanding. I am sure that other older CF dx's will chime in here.
Many hugs, Jenn <img src="i/expressions/face-icon-small-smile.gif" border="0">
 
J

JustDucky

New member
I am an adult dx, dx at 33 yrs old. Why did the docs finally consider CF with you? What did it for me was when I started to grow out B. cepacia. My primary doc scratched her head and did a double take when she saw that on a piece of paper. They repeated my cultures and there it was again. Then she got to thinking...I had a huge weight loss, I don't mean a few lbs either, with alot of digestive issues. When I was younger asthma was a huge problem along with frequent bronchitis and pneumonia that landed me in the hospital about 3 to 4 times a year when I was in my 20's...the docs called it asthmatic exacerbation w/ pneumonia. Because of the persistance of my primary doc, I got sweat tested and genetic screenings done. I am definitely an atypical case.
I believe that because of better diagnostics and the discovery of milder mutations or variants of CF that more and more adults are being diagnosed. In my clinic there was a 54 yr old that was diagnosed after a smart ENT doc suspected CF when this person had a huge sinus history with multiple surgeries. Pulmonary and digestive involvement was nil, mainly her sinuses were affected.
Most CF patients are diagnosed as infants or early childhood. Then there is the small percentage who are diagnosed as teens, early adulthood and then into adulthood.
You have come to a wonderful group with lots of support and understanding. I am sure that other older CF dx's will chime in here.
Many hugs, Jenn <img src="i/expressions/face-icon-small-smile.gif" border="0">
 
J

JustDucky

New member
I am an adult dx, dx at 33 yrs old. Why did the docs finally consider CF with you? What did it for me was when I started to grow out B. cepacia. My primary doc scratched her head and did a double take when she saw that on a piece of paper. They repeated my cultures and there it was again. Then she got to thinking...I had a huge weight loss, I don't mean a few lbs either, with alot of digestive issues. When I was younger asthma was a huge problem along with frequent bronchitis and pneumonia that landed me in the hospital about 3 to 4 times a year when I was in my 20's...the docs called it asthmatic exacerbation w/ pneumonia. Because of the persistance of my primary doc, I got sweat tested and genetic screenings done. I am definitely an atypical case.
I believe that because of better diagnostics and the discovery of milder mutations or variants of CF that more and more adults are being diagnosed. In my clinic there was a 54 yr old that was diagnosed after a smart ENT doc suspected CF when this person had a huge sinus history with multiple surgeries. Pulmonary and digestive involvement was nil, mainly her sinuses were affected.
Most CF patients are diagnosed as infants or early childhood. Then there is the small percentage who are diagnosed as teens, early adulthood and then into adulthood.
You have come to a wonderful group with lots of support and understanding. I am sure that other older CF dx's will chime in here.
Many hugs, Jenn <img src="i/expressions/face-icon-small-smile.gif" border="0">
 
J

JustDucky

New member
I am an adult dx, dx at 33 yrs old. Why did the docs finally consider CF with you? What did it for me was when I started to grow out B. cepacia. My primary doc scratched her head and did a double take when she saw that on a piece of paper. They repeated my cultures and there it was again. Then she got to thinking...I had a huge weight loss, I don't mean a few lbs either, with alot of digestive issues. When I was younger asthma was a huge problem along with frequent bronchitis and pneumonia that landed me in the hospital about 3 to 4 times a year when I was in my 20's...the docs called it asthmatic exacerbation w/ pneumonia. Because of the persistance of my primary doc, I got sweat tested and genetic screenings done. I am definitely an atypical case.
I believe that because of better diagnostics and the discovery of milder mutations or variants of CF that more and more adults are being diagnosed. In my clinic there was a 54 yr old that was diagnosed after a smart ENT doc suspected CF when this person had a huge sinus history with multiple surgeries. Pulmonary and digestive involvement was nil, mainly her sinuses were affected.
Most CF patients are diagnosed as infants or early childhood. Then there is the small percentage who are diagnosed as teens, early adulthood and then into adulthood.
You have come to a wonderful group with lots of support and understanding. I am sure that other older CF dx's will chime in here.
Many hugs, Jenn <img src="i/expressions/face-icon-small-smile.gif" border="0">
 
W

welshwitch

Guest
I too am bewildered by the fact that I have not succumed to this disease as a child. Much of my research suggested that I would die young and never see my late 20s. However, my doctor seems convinced that I will lead a long life. That said I have never been hospitalized and maintain a very good lung function. so i guess it really CAN BE an "adult disease." which i thought was an oxymoron for so many years.

it's very hard for me to look beyond statistics and generalizations.

welsh witch
27/f/cf
 
W

welshwitch

Guest
I too am bewildered by the fact that I have not succumed to this disease as a child. Much of my research suggested that I would die young and never see my late 20s. However, my doctor seems convinced that I will lead a long life. That said I have never been hospitalized and maintain a very good lung function. so i guess it really CAN BE an "adult disease." which i thought was an oxymoron for so many years.

it's very hard for me to look beyond statistics and generalizations.

welsh witch
27/f/cf
 
W

welshwitch

Guest
I too am bewildered by the fact that I have not succumed to this disease as a child. Much of my research suggested that I would die young and never see my late 20s. However, my doctor seems convinced that I will lead a long life. That said I have never been hospitalized and maintain a very good lung function. so i guess it really CAN BE an "adult disease." which i thought was an oxymoron for so many years.

it's very hard for me to look beyond statistics and generalizations.

welsh witch
27/f/cf
 
W

welshwitch

Guest
I too am bewildered by the fact that I have not succumed to this disease as a child. Much of my research suggested that I would die young and never see my late 20s. However, my doctor seems convinced that I will lead a long life. That said I have never been hospitalized and maintain a very good lung function. so i guess it really CAN BE an "adult disease." which i thought was an oxymoron for so many years.

it's very hard for me to look beyond statistics and generalizations.

welsh witch
27/f/cf
 
W

welshwitch

Guest
I too am bewildered by the fact that I have not succumed to this disease as a child. Much of my research suggested that I would die young and never see my late 20s. However, my doctor seems convinced that I will lead a long life. That said I have never been hospitalized and maintain a very good lung function. so i guess it really CAN BE an "adult disease." which i thought was an oxymoron for so many years.

it's very hard for me to look beyond statistics and generalizations.

welsh witch
27/f/cf
 
A

Aspiemom

Guest
I'm one of the late diagnosed. I was dx at 43 and I am now 47years old. I know what you mean about being a medical marvel. Every hospital and dr. had a nickname for me because I was always "the exception to the rule." Finally I was sent to Johns Hopkins where they went into my lungs and found Pseudomonis, hospitalized me to treat it and sent my blood to Ambry Genetics Lab for the confirmation.

From how it was explained to me, the "childhood CF" that is mostly well known has 2 CF genes, where the "Adult CF" has 1 CF gene and 1 mutated CF gene. Our symptoms aren't so evident early in life and get worse as time goes by, which is why we have the late dx. Also, most drs. do the sweat test (they did on me several times) and on Adult CF that can also show up negative or borderline, so they rule out CF, not knowing they should send the blood to a genetics lab.

Don't be alarmed. At first I was both shocked and relieved. Make sure your research is up-to-date, as others have said. Let us know what you find out and how you're doing. We're here for questions, bad days, any time you need someone to talk to who understands. Glad you found us!
 
A

Aspiemom

Guest
I'm one of the late diagnosed. I was dx at 43 and I am now 47years old. I know what you mean about being a medical marvel. Every hospital and dr. had a nickname for me because I was always "the exception to the rule." Finally I was sent to Johns Hopkins where they went into my lungs and found Pseudomonis, hospitalized me to treat it and sent my blood to Ambry Genetics Lab for the confirmation.

From how it was explained to me, the "childhood CF" that is mostly well known has 2 CF genes, where the "Adult CF" has 1 CF gene and 1 mutated CF gene. Our symptoms aren't so evident early in life and get worse as time goes by, which is why we have the late dx. Also, most drs. do the sweat test (they did on me several times) and on Adult CF that can also show up negative or borderline, so they rule out CF, not knowing they should send the blood to a genetics lab.

Don't be alarmed. At first I was both shocked and relieved. Make sure your research is up-to-date, as others have said. Let us know what you find out and how you're doing. We're here for questions, bad days, any time you need someone to talk to who understands. Glad you found us!
 
A

Aspiemom

Guest
I'm one of the late diagnosed. I was dx at 43 and I am now 47years old. I know what you mean about being a medical marvel. Every hospital and dr. had a nickname for me because I was always "the exception to the rule." Finally I was sent to Johns Hopkins where they went into my lungs and found Pseudomonis, hospitalized me to treat it and sent my blood to Ambry Genetics Lab for the confirmation.

From how it was explained to me, the "childhood CF" that is mostly well known has 2 CF genes, where the "Adult CF" has 1 CF gene and 1 mutated CF gene. Our symptoms aren't so evident early in life and get worse as time goes by, which is why we have the late dx. Also, most drs. do the sweat test (they did on me several times) and on Adult CF that can also show up negative or borderline, so they rule out CF, not knowing they should send the blood to a genetics lab.

Don't be alarmed. At first I was both shocked and relieved. Make sure your research is up-to-date, as others have said. Let us know what you find out and how you're doing. We're here for questions, bad days, any time you need someone to talk to who understands. Glad you found us!
 
A

Aspiemom

Guest
I'm one of the late diagnosed. I was dx at 43 and I am now 47years old. I know what you mean about being a medical marvel. Every hospital and dr. had a nickname for me because I was always "the exception to the rule." Finally I was sent to Johns Hopkins where they went into my lungs and found Pseudomonis, hospitalized me to treat it and sent my blood to Ambry Genetics Lab for the confirmation.

From how it was explained to me, the "childhood CF" that is mostly well known has 2 CF genes, where the "Adult CF" has 1 CF gene and 1 mutated CF gene. Our symptoms aren't so evident early in life and get worse as time goes by, which is why we have the late dx. Also, most drs. do the sweat test (they did on me several times) and on Adult CF that can also show up negative or borderline, so they rule out CF, not knowing they should send the blood to a genetics lab.

Don't be alarmed. At first I was both shocked and relieved. Make sure your research is up-to-date, as others have said. Let us know what you find out and how you're doing. We're here for questions, bad days, any time you need someone to talk to who understands. Glad you found us!
 
A

Aspiemom

Guest
I'm one of the late diagnosed. I was dx at 43 and I am now 47years old. I know what you mean about being a medical marvel. Every hospital and dr. had a nickname for me because I was always "the exception to the rule." Finally I was sent to Johns Hopkins where they went into my lungs and found Pseudomonis, hospitalized me to treat it and sent my blood to Ambry Genetics Lab for the confirmation.

From how it was explained to me, the "childhood CF" that is mostly well known has 2 CF genes, where the "Adult CF" has 1 CF gene and 1 mutated CF gene. Our symptoms aren't so evident early in life and get worse as time goes by, which is why we have the late dx. Also, most drs. do the sweat test (they did on me several times) and on Adult CF that can also show up negative or borderline, so they rule out CF, not knowing they should send the blood to a genetics lab.

Don't be alarmed. At first I was both shocked and relieved. Make sure your research is up-to-date, as others have said. Let us know what you find out and how you're doing. We're here for questions, bad days, any time you need someone to talk to who understands. Glad you found us!
 
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