CF FACTS

petnurse

New member
Hi all! Starting tomorrow I will be doing my month long CF awareness month posts on facebook. I will post a fact each day for the entire month. I want to do more than the average well known stuff...avg life expectancy is 37.4..etc. If you have any suggestions, please post them below. These will be more for the general friends of mine to see that only know what I tell them about CF. THANKS SO MUCH FOR THE HELP :-D
 

petnurse

New member
Hi all! Starting tomorrow I will be doing my month long CF awareness month posts on facebook. I will post a fact each day for the entire month. I want to do more than the average well known stuff...avg life expectancy is 37.4..etc. If you have any suggestions, please post them below. These will be more for the general friends of mine to see that only know what I tell them about CF. THANKS SO MUCH FOR THE HELP :-D
 

petnurse

New member
<p>Hi all! Starting tomorrow I will be doing my month long CF awareness month posts on facebook. I will post a fact each day for the entire month. I want to do more than the average well known stuff...avg life expectancy is 37.4..etc. If you have any suggestions, please post them below. These will be more for the general friends of mine to see that only know what I tell them about CF. THANKS SO MUCH FOR THE HELP :-D
 
M

Mommafirst

Guest
1 in 20 Caucasian Americans are carriers
1 in 400 American couples are carriers

Here's a good page on CF STats you could share from...http://www3.nbnet.nb.ca/normap/cfstats.htm
 
M

Mommafirst

Guest
1 in 20 Caucasian Americans are carriers
1 in 400 American couples are carriers

Here's a good page on CF STats you could share from...http://www3.nbnet.nb.ca/normap/cfstats.htm
 
M

Mommafirst

Guest
1 in 20 Caucasian Americans are carriers
<br />1 in 400 American couples are carriers
<br />
<br />Here's a good page on CF STats you could share from...http://www3.nbnet.nb.ca/normap/cfstats.htm
<br />
 

hmw

New member
The majority of facts presented about CF tend to focus on respiratory and digestive issues. Here are some blurbs about some of the other manifestations of the disease: 1. Liver disease affects about 30% of those with CF and after respiratory failure, is the next most common cause of death for those with the disease. Complications include cirrhosis, portal hypertension and liver failure leading to the need for transplant. 2. CF-related bone disease affects 30-35% of those with CF. Many factors cause this, including poor nutritional status, poor pulmonary function, use of certain medications, and especially the systemic inflammation seen in CF. This can become critical when a patient nears transplant stage- severe bone disease can impact transplant status. 3. CF-related diabetes affects up to a quarter of those with CF in their 20's and a much greater number aged 30+. CFRD can impact pulmonary health as well as nutritional status. Fasting oral glucose tolerance tests beginning annually at about age 10 are the most reliable way to screen for this, since it can be asymptomatic for several years initially.
4. CF affects both male and female fertility. About 95% of men will have a condition called CBAVD and be unable to father children naturally. Women are able to carry children if healthy enough, but fertility can be impacted by the thick, sticky mucus seen in those with CF, and menstrual cycles (therefore ovulation) can be affected by low body weight and/or poorly controlled CFRD. 5. CF-related arthritis is a very painful condition many with CF must live with. It is not well understood, but as with so many other CF-related problems, the systemic inflammation that is present, coupled with infection, appears to be a large part of the problem. It can be a more typical arthritis (showing no abnormalities on xray, and with symptoms that completely remit between flares), or a more severe form called hypertrophic pulmonary osteoarthropathy, which results in permanent bone destruction.
eta> ok, so they weren't 'short' as you requested. <img src="i/expressions/face-icon-small-blush.gif" border="0">  If you like any of it, chop it up at will. <img src="i/expressions/face-icon-small-wink.gif" border="0">
 

hmw

New member
The majority of facts presented about CF tend to focus on respiratory and digestive issues. Here are some blurbs about some of the other manifestations of the disease: 1. Liver disease affects about 30% of those with CF and after respiratory failure, is the next most common cause of death for those with the disease. Complications include cirrhosis, portal hypertension and liver failure leading to the need for transplant. 2. CF-related bone disease affects 30-35% of those with CF. Many factors cause this, including poor nutritional status, poor pulmonary function, use of certain medications, and especially the systemic inflammation seen in CF. This can become critical when a patient nears transplant stage- severe bone disease can impact transplant status. 3. CF-related diabetes affects up to a quarter of those with CF in their 20's and a much greater number aged 30+. CFRD can impact pulmonary health as well as nutritional status. Fasting oral glucose tolerance tests beginning annually at about age 10 are the most reliable way to screen for this, since it can be asymptomatic for several years initially.
4. CF affects both male and female fertility. About 95% of men will have a condition called CBAVD and be unable to father children naturally. Women are able to carry children if healthy enough, but fertility can be impacted by the thick, sticky mucus seen in those with CF, and menstrual cycles (therefore ovulation) can be affected by low body weight and/or poorly controlled CFRD. 5. CF-related arthritis is a very painful condition many with CF must live with. It is not well understood, but as with so many other CF-related problems, the systemic inflammation that is present, coupled with infection, appears to be a large part of the problem. It can be a more typical arthritis (showing no abnormalities on xray, and with symptoms that completely remit between flares), or a more severe form called hypertrophic pulmonary osteoarthropathy, which results in permanent bone destruction.
eta> ok, so they weren't 'short' as you requested. <img src="i/expressions/face-icon-small-blush.gif" border="0"> If you like any of it, chop it up at will. <img src="i/expressions/face-icon-small-wink.gif" border="0">
 

hmw

New member
<p>The majority of facts presented about CF tend to focus on respiratory and digestive issues. Here are some blurbs about some of the other manifestations of the disease: <br /> <br />1. Liver disease affects about 30% of those with CF and after respiratory failure, is the next most common cause of death for those with the disease. Complications include cirrhosis, portal hypertension and liver failure leading to the need for transplant. <br /> <br />2. CF-related bone disease affects 30-35% of those with CF. Many factors cause this, including poor nutritional status, poor pulmonary function, use of certain medications, and especially the systemic inflammation seen in CF. This can become critical when a patient nears transplant stage- severe bone disease can impact transplant status. <br /> <br />3. CF-related diabetes affects up to a quarter of those with CF in their 20's and a much greater number aged 30+. CFRD can impact pulmonary health as well as nutritional status. Fasting oral glucose tolerance tests beginning annually at about age 10 are the most reliable way to screen for this, since it can be asymptomatic for several years initially.
<p><br />4. CF affects both male and female fertility. About 95% of men will have a condition called CBAVD and be unable to father children naturally. Women are able to carry children if healthy enough, but fertility can be impacted by the thick, sticky mucus seen in those with CF, and menstrual cycles (therefore ovulation) can be affected by low body weight and/or poorly controlled CFRD. <br /> <br />5. CF-related arthritis is a very painful condition many with CF must live with. It is not well understood, but as with so many other CF-related problems, the systemic inflammation that is present, coupled with infection, appears to be a large part of the problem. It can be a more typical arthritis (showing no abnormalities on xray, and with symptoms that completely remit between flares), or a more severe form called hypertrophic pulmonary osteoarthropathy, which results in permanent bone destruction.
<p>eta> ok, so they weren't 'short' as you requested. <img src="i/expressions/face-icon-small-blush.gif" border="0"> If you like any of it, chop it up at will. <img src="i/expressions/face-icon-small-wink.gif" border="0">
 

LouLou

New member
Often times cf doctors are hesitant to prescribe patients pain killers as they would non cf patients because of fear of sedating our already comprimised breathing. In the adult cf world there is a disproportionate number of artists/designers, etc. not likely because of us being genetically predisposed to being artistic but because our parents thought that if this child made it to adulthood they can enjoy a sedentary pasttime in the arts. Cf patients may actually have smaller facial features than they would have had otherwise. This lends us to be a cute bunch :) The acidity of our sputum and the fact that it is coming into our mouth all day long eats away at our enamel in adulthood. Coughing though a necessary evil causes many problems for people with cf including broken ribs, herniated disks, incontinence, muscle spasms, hunched shoulders/back, back pain, reflux and air trapping in our lungs causing bird cage chest. Most of us have experienced sometime in our lives of extreme embarrasement due to our cough (like being asked to leave a class during a test due to our disruption). Anyway, just some fun facts about cf. You'll likely not see anywhere else :)
 

LouLou

New member
Often times cf doctors are hesitant to prescribe patients pain killers as they would non cf patients because of fear of sedating our already comprimised breathing. In the adult cf world there is a disproportionate number of artists/designers, etc. not likely because of us being genetically predisposed to being artistic but because our parents thought that if this child made it to adulthood they can enjoy a sedentary pasttime in the arts. Cf patients may actually have smaller facial features than they would have had otherwise. This lends us to be a cute bunch :) The acidity of our sputum and the fact that it is coming into our mouth all day long eats away at our enamel in adulthood. Coughing though a necessary evil causes many problems for people with cf including broken ribs, herniated disks, incontinence, muscle spasms, hunched shoulders/back, back pain, reflux and air trapping in our lungs causing bird cage chest. Most of us have experienced sometime in our lives of extreme embarrasement due to our cough (like being asked to leave a class during a test due to our disruption). Anyway, just some fun facts about cf. You'll likely not see anywhere else :)
 

LouLou

New member
<p>Often times cf doctors are hesitant to prescribe patients pain killers as they would non cf patients because of fear of sedating our already comprimised breathing. <br /> <br />In the adult cf world there is a disproportionate number of artists/designers, etc. not likely because of us being genetically predisposed to being artistic but because our parents thought that if this child made it to adulthood they can enjoy a sedentary pasttime in the arts. <br /> <br />Cf patients may actually have smaller facial features than they would have had otherwise. This lends us to be a cute bunch :) <br /> <br />The acidity of our sputum and the fact that it is coming into our mouth all day long eats away at our enamel in adulthood. <br /> <br />Coughing though a necessary evil causes many problems for people with cf including broken ribs, herniated disks, incontinence, muscle spasms, hunched shoulders/back, back pain, reflux and air trapping in our lungs causing bird cage chest. Most of us have experienced sometime in our lives of extreme embarrasement due to our cough (like being asked to leave a class during a test due to our disruption). <br /> <br />Anyway, just some fun facts about cf. You'll likely not see anywhere else :)
 
The salt deficiency which separates CFers from non CFers and causes many of the issues CF patients deal with is less than one teaspoon less than a non CF patient.

Jerry.......father to Ryan, 11, w/cf dd508, Luke, 8, CF carrier and Sean, 3, w/cf dd508
 
The salt deficiency which separates CFers from non CFers and causes many of the issues CF patients deal with is less than one teaspoon less than a non CF patient.

Jerry.......father to Ryan, 11, w/cf dd508, Luke, 8, CF carrier and Sean, 3, w/cf dd508
 
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