Opening a can o' worms

P

Printer

Active member
I was dx at age 47. If I were 3 today I would be dx today. Those of us who are older, in many cases, were either mis-diagnosed or were treated by Doctors who were "ignorant" of CF at that time. I saw a chart on here and according to that chart my case is in the top 10% for most severe.
<br />
<br />Bill
 
K

Keepercjr

Guest
There are plenty who were diagnosed later in life who *should* have been diagnosed as children but were just missed or misdiagnosed. And once you were no longer a very young child CF never entered the doctor's thoughts so there was no chance of getting the CF diagnosis no matter how sick you were. Now that we know CF is not just a childhood disease more doctors are considering it for their older patients.

Harriet I was diagnosed at 6 months of age. My brother who was 3.5 years younger than me was diagnosed shortly after birth because of my diagnosis. He died shortly after he turned 13. I am 30 and doing fine. Same CF genes but obviously we have something different genetically considering our differing CF progressions.

A median age is just a median and that # can easily be skewed. I still don't know why we rely on and report it so much. But then again how would we quantify progress in treating the disease and CF patients living longer?
 
K

Keepercjr

Guest
There are plenty who were diagnosed later in life who *should* have been diagnosed as children but were just missed or misdiagnosed. And once you were no longer a very young child CF never entered the doctor's thoughts so there was no chance of getting the CF diagnosis no matter how sick you were. Now that we know CF is not just a childhood disease more doctors are considering it for their older patients.

Harriet I was diagnosed at 6 months of age. My brother who was 3.5 years younger than me was diagnosed shortly after birth because of my diagnosis. He died shortly after he turned 13. I am 30 and doing fine. Same CF genes but obviously we have something different genetically considering our differing CF progressions.

A median age is just a median and that # can easily be skewed. I still don't know why we rely on and report it so much. But then again how would we quantify progress in treating the disease and CF patients living longer?
 
K

Keepercjr

Guest
There are plenty who were diagnosed later in life who *should* have been diagnosed as children but were just missed or misdiagnosed. And once you were no longer a very young child CF never entered the doctor's thoughts so there was no chance of getting the CF diagnosis no matter how sick you were. Now that we know CF is not just a childhood disease more doctors are considering it for their older patients.
<br />
<br />Harriet I was diagnosed at 6 months of age. My brother who was 3.5 years younger than me was diagnosed shortly after birth because of my diagnosis. He died shortly after he turned 13. I am 30 and doing fine. Same CF genes but obviously we have something different genetically considering our differing CF progressions.
<br />
<br />A median age is just a median and that # can easily be skewed. I still don't know why we rely on and report it so much. But then again how would we quantify progress in treating the disease and CF patients living longer?
<br />
<br />
 
P

Printer

Active member
<P>As late as 2006 my second mutation was only suspected to be a CF gene. It is important to note that, people with CF children today, live in a very different world than those of us over 40 grew up in.   </P>
<P>Even at age 60 the max number of mutations that could be screened was 250.</P>
<P> </P>
<P>I personally find this thread to be demeaning to those of us who are still lucky enough to still be alive.Bill</P>
 
P

Printer

Active member
<P>As late as 2006 my second mutation was only suspected to be a CF gene. It is important to note that, people with CF children today, live in a very different world than those of us over 40 grew up in. </P>
<P>Even at age 60 the max number of mutations that could be screened was 250.</P>
<P></P>
<P>I personally find this thread to be demeaning to those of us who are still lucky enough to still be alive.Bill</P>
 
P

Printer

Active member
<P>As late as 2006 my second mutation was only suspected to be a CF gene. <BR><BR>It is important to note that, people with CF children today, live in a very different world than those of us over 40 grew up in. <BR> </P>
<P>Even at age 60 the max number of mutations that could be screened was 250.</P>
<P></P>
<P>I personally find this thread to be demeaning to those of us who are still lucky enough to still be alive.<BR>Bill</P>
 
M

Mistyjo

New member
My cousin was 43 yo when she was diagnosed and she died at 46. She was only tested after numerous hospitalizations, lung surgeries, failure to thrive. The only reason she was tested was because she found a doctor that was willing to test for everything to try to save her life but it was too late at that point.
<br>My daughter is 5 yo and was tested this past April. She is failure to thrive and has been on/off since infancy. She also has chronic constipation since birth.I agree with Keepercjr.  I've read many times when siblings have the same mutations but for some reason one will have more problems than the other.  I think other genetic factors also play a role.
 
M

Mistyjo

New member
My cousin was 43 yo when she was diagnosed and she died at 46. She was only tested after numerous hospitalizations, lung surgeries, failure to thrive. The only reason she was tested was because she found a doctor that was willing to test for everything to try to save her life but it was too late at that point.
<br>My daughter is 5 yo and was tested this past April. She is failure to thrive and has been on/off since infancy. She also has chronic constipation since birth.I agree with Keepercjr. I've read many times when siblings have the same mutations but for some reason one will have more problems than the other. I think other genetic factors also play a role.
 
M

Mistyjo

New member
<p>My cousin was 43 yo when she was diagnosed and she died at 46. She was only tested after numerous hospitalizations, lung surgeries, failure to thrive. The only reason she was tested was because she found a doctor that was willing to test for everything to try to save her life but it was too late at that point.
<br>My daughter is 5 yo and was tested this past April. She is failure to thrive and has been on/off since infancy. She also has chronic constipation since birth.<p>I agree with Keepercjr. I've read many times when siblings have the same mutations but for some reason one will have more problems than the other. I think other genetic factors also play a role.
 
P

Printer

Active member
If you GOOGLE cysticfibrosishealth.com you will fimd an area called A HISTORY OF CYSTIC FIBROSIS. In the 1930's it was described as "the condition that is caused by a deficiency of Vitamin A.

In the 1940's the abnormal secretion of mucus was connected to CF.

The 1950's saw the beginnings of the sweat test.

"THE GENE" was discovered in 1989.

I was born in 1940, more than 10 years prior to the introduction of a sweat test. Do you have any clue as to how different my world was compaired to the world that your children were dx in. You had to be on deaths door to be dx with CF in the 40s and 50s.

Do you know what it is like to be hospitalized over 56 times in seven years for pancreatitis only to be acused of being an alcholic (even tho I didn't drink). Or to be acused of faking the pain because I was a drug adict.

I was always the smallest (weight and height) throughout school. There was no such thing as failure to thrive, just small skinny sickly kids. It was during and post World War II, neither food, medicine or doctors were plentyful.

Be thankful that you live in a world where infants are tested within hours of birth and there is early treatment. Also be thankful that some interested people raised the money and funded the research that you benefit from now.

We don't need two lists for those over 40.
 
P

Printer

Active member
If you GOOGLE cysticfibrosishealth.com you will fimd an area called A HISTORY OF CYSTIC FIBROSIS. In the 1930's it was described as "the condition that is caused by a deficiency of Vitamin A.

In the 1940's the abnormal secretion of mucus was connected to CF.

The 1950's saw the beginnings of the sweat test.

"THE GENE" was discovered in 1989.

I was born in 1940, more than 10 years prior to the introduction of a sweat test. Do you have any clue as to how different my world was compaired to the world that your children were dx in. You had to be on deaths door to be dx with CF in the 40s and 50s.

Do you know what it is like to be hospitalized over 56 times in seven years for pancreatitis only to be acused of being an alcholic (even tho I didn't drink). Or to be acused of faking the pain because I was a drug adict.

I was always the smallest (weight and height) throughout school. There was no such thing as failure to thrive, just small skinny sickly kids. It was during and post World War II, neither food, medicine or doctors were plentyful.

Be thankful that you live in a world where infants are tested within hours of birth and there is early treatment. Also be thankful that some interested people raised the money and funded the research that you benefit from now.

We don't need two lists for those over 40.
 
P

Printer

Active member
If you GOOGLE cysticfibrosishealth.com you will fimd an area called A HISTORY OF CYSTIC FIBROSIS. In the 1930's it was described as "the condition that is caused by a deficiency of Vitamin A.
<br />
<br />In the 1940's the abnormal secretion of mucus was connected to CF.
<br />
<br />The 1950's saw the beginnings of the sweat test.
<br />
<br />"THE GENE" was discovered in 1989.
<br />
<br />I was born in 1940, more than 10 years prior to the introduction of a sweat test. Do you have any clue as to how different my world was compaired to the world that your children were dx in. You had to be on deaths door to be dx with CF in the 40s and 50s.
<br />
<br />Do you know what it is like to be hospitalized over 56 times in seven years for pancreatitis only to be acused of being an alcholic (even tho I didn't drink). Or to be acused of faking the pain because I was a drug adict.
<br />
<br />I was always the smallest (weight and height) throughout school. There was no such thing as failure to thrive, just small skinny sickly kids. It was during and post World War II, neither food, medicine or doctors were plentyful.
<br />
<br />Be thankful that you live in a world where infants are tested within hours of birth and there is early treatment. Also be thankful that some interested people raised the money and funded the research that you benefit from now.
<br />
<br />We don't need two lists for those over 40.
<br />
<br />
<br />
<br />
 
K

kitomd21

New member
Bill - you make some excellent points and demeaning you is the last thing intended. The sad truth is that people like yourself are an extreme minority where CF is concerned - whether diagnosed "late" or as an infant. I hope DD exceeds whatever median age there may be over the years. It's truly a blessing that DD was diagnosed essentially after birth, but there are others diagnosed at her same age and privy to the same current therapies that are very ill or have passed away. The current therapies argument is a tough pill to swallow for those parents who do everything possible yet their children with CF are still dying young...no where near their seventies...or even their forties. Each case is different.
 
K

kitomd21

New member
Bill - you make some excellent points and demeaning you is the last thing intended. The sad truth is that people like yourself are an extreme minority where CF is concerned - whether diagnosed "late" or as an infant. I hope DD exceeds whatever median age there may be over the years. It's truly a blessing that DD was diagnosed essentially after birth, but there are others diagnosed at her same age and privy to the same current therapies that are very ill or have passed away. The current therapies argument is a tough pill to swallow for those parents who do everything possible yet their children with CF are still dying young...no where near their seventies...or even their forties. Each case is different.
 
K

kitomd21

New member
Bill - you make some excellent points and demeaning you is the last thing intended. The sad truth is that people like yourself are an extreme minority where CF is concerned - whether diagnosed "late" or as an infant. I hope DD exceeds whatever median age there may be over the years. It's truly a blessing that DD was diagnosed essentially after birth, but there are others diagnosed at her same age and privy to the same current therapies that are very ill or have passed away. The current therapies argument is a tough pill to swallow for those parents who do everything possible yet their children with CF are still dying young...no where near their seventies...or even their forties. Each case is different.
 
F

farmfamily

New member
<P>This is exactly what has been going through my mind lately.  I mean I know there have been major adavances done in the treatment of CF.  But hasn't the average life predicted been affected by all these adults that aren't even diagnosed until they are well into the adulthood.  They must have had healthy childhoods.  My teenagers were diagnosed shortly after birth and pre-birth.  I too think that maybe there  should be a sepreration. </P>
<P>Until recently I was always given the hope that if we did all our treatments, did all the tune- ups, took all their meds my kids  would always have the same chance at such a long life.</P>
<P>Sorry have been wanting to voice this but didn't want to be a downer for others. </P>
<P>Recently, really had the rug pulled out from under us with prognosis. </P>
<P> </P>
<P>three children, younger two w/cf. DD508</P>
 
You must log in or register to reply here.
Top