brief, yet smart CF explanation?

L

littledebbie

New member
What do you tell people/How do you explain CF?

Obviously I have told many people before. But I am constantly tweeking and playing around with the right balance of scientific information and practical personal impact information. I mean CF is sort of a complex genetic disease with the DNA explaining and many mutations of different classes etc. And well it seems a bit much to jump off into a dissertation and yet trying to explain it without some of that info is really rather difficult.

I was wondering if any of you have developed a somewhat succinct "beginners" explanation that is informative without being daunting?

I would appreciate hearing from as many people as possible. I'm looking for good material to "borrow" and hopefully mold into a good ...uhmm pocket expalanation <img src="i/expressions/face-icon-small-wink.gif" border="0">
 
L

littledebbie

New member
What do you tell people/How do you explain CF?

Obviously I have told many people before. But I am constantly tweeking and playing around with the right balance of scientific information and practical personal impact information. I mean CF is sort of a complex genetic disease with the DNA explaining and many mutations of different classes etc. And well it seems a bit much to jump off into a dissertation and yet trying to explain it without some of that info is really rather difficult.

I was wondering if any of you have developed a somewhat succinct "beginners" explanation that is informative without being daunting?

I would appreciate hearing from as many people as possible. I'm looking for good material to "borrow" and hopefully mold into a good ...uhmm pocket expalanation <img src="i/expressions/face-icon-small-wink.gif" border="0">
 
L

littledebbie

New member
What do you tell people/How do you explain CF?

Obviously I have told many people before. But I am constantly tweeking and playing around with the right balance of scientific information and practical personal impact information. I mean CF is sort of a complex genetic disease with the DNA explaining and many mutations of different classes etc. And well it seems a bit much to jump off into a dissertation and yet trying to explain it without some of that info is really rather difficult.

I was wondering if any of you have developed a somewhat succinct "beginners" explanation that is informative without being daunting?

I would appreciate hearing from as many people as possible. I'm looking for good material to "borrow" and hopefully mold into a good ...uhmm pocket expalanation <img src="i/expressions/face-icon-small-wink.gif" border="0">
 
N

NoExcuses

New member
A gene I have makes me have extra mucus in my lungs. Extra mucus leads to repeated infections & lung damage.

If the enzyme thing comes up, I'll say that I have mucus in my pancreatic ducts that interferes with enzyme transport.
 
N

NoExcuses

New member
A gene I have makes me have extra mucus in my lungs. Extra mucus leads to repeated infections & lung damage.

If the enzyme thing comes up, I'll say that I have mucus in my pancreatic ducts that interferes with enzyme transport.
 
N

NoExcuses

New member
A gene I have makes me have extra mucus in my lungs. Extra mucus leads to repeated infections & lung damage.

If the enzyme thing comes up, I'll say that I have mucus in my pancreatic ducts that interferes with enzyme transport.
 
A

Allie

New member
Ry suaully said "I managed to avoid the aging thing by letting my parents give me a fatal genetic illness. It's kind of a pain in the ass, but I deal with it. It makes lots of extra gunk in my lungs, which is why I cough like I smoke a pack a day. Like I said, pain in the ass, but I deal."

Usually that satisfied people. Brief and to the point.
 
A

Allie

New member
Ry suaully said "I managed to avoid the aging thing by letting my parents give me a fatal genetic illness. It's kind of a pain in the ass, but I deal with it. It makes lots of extra gunk in my lungs, which is why I cough like I smoke a pack a day. Like I said, pain in the ass, but I deal."

Usually that satisfied people. Brief and to the point.
 
A

Allie

New member
Ry suaully said "I managed to avoid the aging thing by letting my parents give me a fatal genetic illness. It's kind of a pain in the ass, but I deal with it. It makes lots of extra gunk in my lungs, which is why I cough like I smoke a pack a day. Like I said, pain in the ass, but I deal."

Usually that satisfied people. Brief and to the point.
 
J

JazzysMom

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>blackchameleon</b></i>

tell em it means your lungs are more f**ked up than michael jackson.</end quote></div>


OHHHHH soooo bad LOL! My basic explanation is that I was born with a disease that causes havic on my lungs & belly, but dont fear its not contagious. Some days are better then others!
 
J

JazzysMom

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>blackchameleon</b></i>

tell em it means your lungs are more f**ked up than michael jackson.</end quote></div>


OHHHHH soooo bad LOL! My basic explanation is that I was born with a disease that causes havic on my lungs & belly, but dont fear its not contagious. Some days are better then others!
 
J

JazzysMom

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>blackchameleon</b></i>

tell em it means your lungs are more f**ked up than michael jackson.</end quote></div>


OHHHHH soooo bad LOL! My basic explanation is that I was born with a disease that causes havic on my lungs & belly, but dont fear its not contagious. Some days are better then others!
 
M

Mockingbird

New member
Not sure if this is what you're looking for, but I'm currently writing something and I have a short description of CF in it.


-------------------
Cystic fibrosis is a genetic defect which affects the use of salt within the body. We all know the body needs water to stay hydrated and keep us alive. To be more specific, the body needs both salt and water. In the lining cells of many organs of the human body, there is something called a transmembrane conductance regulator. This "CFTR" as it is called uses sodium and chloride ions to regulate the flow of water in and out of these organs. The sodium ions are responsible for leading the water into the lining cells, while the chloride ions are responsible for leading the water into the organs. With cystic fibrosis, however, the CFTR is defective, and the chloride ions are unable to pass through the lining cells and into the organ, which means water is also prevented from passing through.

This tiny malfunction is responsible for many catastrophic problems. The dehydrated mucus in the lungs becomes thick and sticky, blocking airways and becoming a veritable playground for fungal and bacterial infection which, in turn, incites the lungs to create even more mucus. Meanwhile, the digestive system is incapable of delivering digestive enzymes to the small intestine, and vital nutrients are flushed down the toilet instead of being absorbed into the body. These are the two most prevalent symptoms of cystic fibrosis. Others can include diabetes, acid
reflux, sinusitis, osteoporosis, arthritis, or cirrhosis of the liver.
---------------------------

I have not really checked all the information yet to see if it is 100% accurate, but as far as I know this is basically how CF works.
 
M

Mockingbird

New member
Not sure if this is what you're looking for, but I'm currently writing something and I have a short description of CF in it.


-------------------
Cystic fibrosis is a genetic defect which affects the use of salt within the body. We all know the body needs water to stay hydrated and keep us alive. To be more specific, the body needs both salt and water. In the lining cells of many organs of the human body, there is something called a transmembrane conductance regulator. This "CFTR" as it is called uses sodium and chloride ions to regulate the flow of water in and out of these organs. The sodium ions are responsible for leading the water into the lining cells, while the chloride ions are responsible for leading the water into the organs. With cystic fibrosis, however, the CFTR is defective, and the chloride ions are unable to pass through the lining cells and into the organ, which means water is also prevented from passing through.

This tiny malfunction is responsible for many catastrophic problems. The dehydrated mucus in the lungs becomes thick and sticky, blocking airways and becoming a veritable playground for fungal and bacterial infection which, in turn, incites the lungs to create even more mucus. Meanwhile, the digestive system is incapable of delivering digestive enzymes to the small intestine, and vital nutrients are flushed down the toilet instead of being absorbed into the body. These are the two most prevalent symptoms of cystic fibrosis. Others can include diabetes, acid
reflux, sinusitis, osteoporosis, arthritis, or cirrhosis of the liver.
---------------------------

I have not really checked all the information yet to see if it is 100% accurate, but as far as I know this is basically how CF works.
 
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