Is CF contagious?
No, CF is not contagious and is strictly genetic.
Can a healthy person catch the same bugs the person with CF is infected with?
No. “Healthy people don't get sick when exposed to the bacteria of a person with CF. What is more likely is for the person with CF to contract what others are carrying, which would result in a flare-up requiring hospitalization. Therefore, it's possible to see someone with CF wear masks when they are in close contact with the public. The mask is in place to protect their own deeply compromised lungs, since a simple cold germ could put the person with cf in bed for a month."
Why are CF’ers advised to keep distance from one another?
The bacteria that infects the lungs of those with CF are easily contracted by another patient with CF, so based on the recommondation of the CF Foundation, patients are advised to keep a minimum safe distance of three feet between each other at all times. If a bacteria is passed from one CF sufferer to another, the consequences can be deadly.
CF patients generally start off with comparatively mild infections like staph, but as the disease progresses, the strains that take root become progressively more virulent. Even with regular checkups, one can never be absolutely sure what kind of bacteria is growing at a given moment, and if a person with a particularly vicious bacteria passes it to another CF person who doesn't have it yet, they can inadvertently quicken the other's decline."
Do you share a room while in the hospital?
No, Never, not even with a patient without CF.
So, are you stuck in your room?
No. Patients are encouraged to get as much exercise as possible. They are seen walking the halls in the wee hours of the morning, as most suffer from insomnia.
What do you do for 14 days in a hospital?
Most patients bring necessities from home which make their stay a little more like home - family photos and other interests posted on the entrance to their room, their favorite boxes of cereal and such, laptop computers, ipods, cell phones, xbox - you name it.
How often does Sally get Tune-ups?
See Graph - Tune-Up Trend
Currently, I have an average turn-around of 6 months, sometimes sooner. At one point in my life, I never needed "tune-ups". But due to the nature of this disease, lung health has deteariated and I get sick more frequently. Every flare-up of infection leaves the lungs less able to fight the next one. Seeking appropriate treatment at the first sign of a flare-up keeps the lungs healthier longer. I learned this the hard way.
What causes CF?
Cystic fibrosis (CF) is caused by a defect in a gene called the cystic fibrosis transmembrane conductance regulator (CFTR) gene. This gene makes a protein that controls the movement of salt and water in and out of the cells in your body. In people with CF, the gene does not work effectively. This causes the thick, sticky mucus and very salty sweat that are the main features of CF.
What is the average life span for someone with CF?
The median age survival for CF patients in 2005 is 36.8 years.
This is up from 2004’s figure of 35.1 years.
And so, what is the longest a person with CF has lived?
The oldest person with CF was 76 years of age
Is CF visible?
Yes, it can be. Besides the respiratory symptoms of coughing, wheezing and shortness of breath, some patients also show other signs such as: clubbed fingers, barrel chest, and/or flared nostrils.
Does CF affect everybody the same?
No, CF affects every patient differently. Even siblings in the same family who have the same CF mutations will have a variation in their complications. Research is currently being conducted and investigated by the CF foundation to discover why this is.
How is Lung Health Graded?
In general, medical guidelines suggest the following with regards to the severity of lung damage, based on fev1 %’s:
Mild – 90% - 70%
Moderate - 70% - 40%
Severe - 40% and below
Are there different levels/severities of CF?
CF can affect patients differently. There are more than 1,300 mutations- or versions- of the defective CF gene. These mutations impact people differently. Some people have more severe lung disease at an early age, and others have more problems with their digestive system.
What is a CF mutation?
Genes are strung together on Chromosomes, rodlike sturctures found in the nucleus of each cell. Human beings have 46 chromosomes, arranged in 23 pairs. In each pair, one chromosome is contributed by the mother, the other by the father. The gene involved in CF is found on chromosome 7. Each person has two copies of the gene, one on each chromosome. Because this gene is recessive, a person must inherit two genes containing a mutation-one from the mother, one from the father-to experience the symptoms of CF. If only one gene has a mutation, the person will be a carrier, who can pass the gene on but will not have symptoms of the disease.
No, CF is not contagious and is strictly genetic.
Can a healthy person catch the same bugs the person with CF is infected with?
No. “Healthy people don't get sick when exposed to the bacteria of a person with CF. What is more likely is for the person with CF to contract what others are carrying, which would result in a flare-up requiring hospitalization. Therefore, it's possible to see someone with CF wear masks when they are in close contact with the public. The mask is in place to protect their own deeply compromised lungs, since a simple cold germ could put the person with cf in bed for a month."
Why are CF’ers advised to keep distance from one another?
The bacteria that infects the lungs of those with CF are easily contracted by another patient with CF, so based on the recommondation of the CF Foundation, patients are advised to keep a minimum safe distance of three feet between each other at all times. If a bacteria is passed from one CF sufferer to another, the consequences can be deadly.
CF patients generally start off with comparatively mild infections like staph, but as the disease progresses, the strains that take root become progressively more virulent. Even with regular checkups, one can never be absolutely sure what kind of bacteria is growing at a given moment, and if a person with a particularly vicious bacteria passes it to another CF person who doesn't have it yet, they can inadvertently quicken the other's decline."
Do you share a room while in the hospital?
No, Never, not even with a patient without CF.
So, are you stuck in your room?
No. Patients are encouraged to get as much exercise as possible. They are seen walking the halls in the wee hours of the morning, as most suffer from insomnia.
What do you do for 14 days in a hospital?
Most patients bring necessities from home which make their stay a little more like home - family photos and other interests posted on the entrance to their room, their favorite boxes of cereal and such, laptop computers, ipods, cell phones, xbox - you name it.
How often does Sally get Tune-ups?
See Graph - Tune-Up Trend
Currently, I have an average turn-around of 6 months, sometimes sooner. At one point in my life, I never needed "tune-ups". But due to the nature of this disease, lung health has deteariated and I get sick more frequently. Every flare-up of infection leaves the lungs less able to fight the next one. Seeking appropriate treatment at the first sign of a flare-up keeps the lungs healthier longer. I learned this the hard way.
What causes CF?
Cystic fibrosis (CF) is caused by a defect in a gene called the cystic fibrosis transmembrane conductance regulator (CFTR) gene. This gene makes a protein that controls the movement of salt and water in and out of the cells in your body. In people with CF, the gene does not work effectively. This causes the thick, sticky mucus and very salty sweat that are the main features of CF.
What is the average life span for someone with CF?
The median age survival for CF patients in 2005 is 36.8 years.
This is up from 2004’s figure of 35.1 years.
And so, what is the longest a person with CF has lived?
The oldest person with CF was 76 years of age
Is CF visible?
Yes, it can be. Besides the respiratory symptoms of coughing, wheezing and shortness of breath, some patients also show other signs such as: clubbed fingers, barrel chest, and/or flared nostrils.
Does CF affect everybody the same?
No, CF affects every patient differently. Even siblings in the same family who have the same CF mutations will have a variation in their complications. Research is currently being conducted and investigated by the CF foundation to discover why this is.
How is Lung Health Graded?
In general, medical guidelines suggest the following with regards to the severity of lung damage, based on fev1 %’s:
Mild – 90% - 70%
Moderate - 70% - 40%
Severe - 40% and below
Are there different levels/severities of CF?
CF can affect patients differently. There are more than 1,300 mutations- or versions- of the defective CF gene. These mutations impact people differently. Some people have more severe lung disease at an early age, and others have more problems with their digestive system.
What is a CF mutation?
Genes are strung together on Chromosomes, rodlike sturctures found in the nucleus of each cell. Human beings have 46 chromosomes, arranged in 23 pairs. In each pair, one chromosome is contributed by the mother, the other by the father. The gene involved in CF is found on chromosome 7. Each person has two copies of the gene, one on each chromosome. Because this gene is recessive, a person must inherit two genes containing a mutation-one from the mother, one from the father-to experience the symptoms of CF. If only one gene has a mutation, the person will be a carrier, who can pass the gene on but will not have symptoms of the disease.
What are CF probabilities?
Probabilities can differ depending on whether or not each parent is a carrier or is affected with CF.
If both parents are carriers of the defective gene and have children, there is a:
25% chance unaffected (no CF, no carrier)
50% chance unaffected carrier
25% chance affected (CF)
If one parent is a CF carrier and one parent has CF:
50% chance affected (CF)
50% chance unaffected carrier
If one parent has CF and one is a noncarrier:
100% chance unaffected carrier
If one parent is a carrier and one is a noncarrier:
50% chance unaffected (no CF, no carrier)
50% chance unaffected carrier
What is a nebulizer?
A Nebulizer is a mechanism that is used to turn a liquid medication into a mist for easy inhalation. The liquid is turned into mist with the use of pressurized air generated by the nebulizer. A nebulizer may be hand-held or larger ones that require a mask to be strapped around the face.
Is coughing up blood common in individuals with CF?
Coughing up blood is referred to as Hemoptysis. A small case of it is common amongst CF patients. Chronic or severe hemoptysis can cause death.
What is 65 Roses?
"65 Roses" is what some children with cystic fibrosis (CF) call their disease because the words are much easier for them to pronounce.
Mary G. Weiss became a volunteer for the Cystic Fibrosis Foundation in 1965 after learning that her three little boys had CF. Her duty was to call every civic club, social and service organization seeking financial support for CF research.
Mary's 4-year-old son, Richard, listened closely to his mother as she made each call. After several calls, Richard came into the room and told his Mom,
"I know what you are working for." Mary was dumbstruck because Richard did not know what she was doing, nor did he know that he had cystic fibrosis. With some trepidation, Mary asked, "What am I working for, Richard?" He answered, "You are working for 65 Roses." Mary was speechless. He could not see the tears running down Mary's cheeks as she stammered, "Yes Richard, I'm working for 65 Roses."
Since 1965, the term "65 Roses" has been used by children of all ages to describe their disease. But, making it easier to say does not make CF any easier to live with. The "65 Roses" story has captured the hearts and emotions of all who have heard it. The rose, appropriately the ancient symbol of love, has become a symbol of the Cystic Fibrosis Foundation. 65 Roses® is a registered trademark of the Cystic Fibrosis Foundation.
Probabilities can differ depending on whether or not each parent is a carrier or is affected with CF.
If both parents are carriers of the defective gene and have children, there is a:
25% chance unaffected (no CF, no carrier)
50% chance unaffected carrier
25% chance affected (CF)
If one parent is a CF carrier and one parent has CF:
50% chance affected (CF)
50% chance unaffected carrier
If one parent has CF and one is a noncarrier:
100% chance unaffected carrier
If one parent is a carrier and one is a noncarrier:
50% chance unaffected (no CF, no carrier)
50% chance unaffected carrier
What is a nebulizer?
A Nebulizer is a mechanism that is used to turn a liquid medication into a mist for easy inhalation. The liquid is turned into mist with the use of pressurized air generated by the nebulizer. A nebulizer may be hand-held or larger ones that require a mask to be strapped around the face.
Is coughing up blood common in individuals with CF?
Coughing up blood is referred to as Hemoptysis. A small case of it is common amongst CF patients. Chronic or severe hemoptysis can cause death.
What is 65 Roses?
"65 Roses" is what some children with cystic fibrosis (CF) call their disease because the words are much easier for them to pronounce.
Mary G. Weiss became a volunteer for the Cystic Fibrosis Foundation in 1965 after learning that her three little boys had CF. Her duty was to call every civic club, social and service organization seeking financial support for CF research.
Mary's 4-year-old son, Richard, listened closely to his mother as she made each call. After several calls, Richard came into the room and told his Mom,
"I know what you are working for." Mary was dumbstruck because Richard did not know what she was doing, nor did he know that he had cystic fibrosis. With some trepidation, Mary asked, "What am I working for, Richard?" He answered, "You are working for 65 Roses." Mary was speechless. He could not see the tears running down Mary's cheeks as she stammered, "Yes Richard, I'm working for 65 Roses."
Since 1965, the term "65 Roses" has been used by children of all ages to describe their disease. But, making it easier to say does not make CF any easier to live with. The "65 Roses" story has captured the hearts and emotions of all who have heard it. The rose, appropriately the ancient symbol of love, has become a symbol of the Cystic Fibrosis Foundation. 65 Roses® is a registered trademark of the Cystic Fibrosis Foundation.
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