<b>Hey all,
I recently posted this on my facebook page after a bout in hospital. I got to a point in my life where I realised how much I was hiding my CF, I thought I was being strong as I didn't want people to worry about me or treat me different, but I realised it was just me being scared. So I wrote this note and posted it up for everyone to see and all I have received since is love, support and understanding. The reason I am posting it here is simply because if anyone else is feeling they need to open up more about CF I hope this encourages them to do it, I hope this helps
Cheers
Ash</b>
<i>As some of you may know I have Cystic Fibrosis, for some of you who have known me for a while this may come as a shock as I have never been very forthcoming with information about it. So I thought it was time I started to educate people a little more, this is not some cry for help, nor a request for donations, this is simply an opportunity for me to let you all know a bit more. There is a chance that at one stage in your life you will know someone who has a child with CF, unfortunately all information on the internet is rather depressing, so I thought I would put this up.
What is Cystic Fibrosis?
Cystic Fibrosis (CF) is a recessive genetic condition. The gene involved in CF gives instructions for the cells to make a protein that controls the movement of salt in and out of cells.
This salt transport gene lies on chromosome 7. Everyone has two copies of chromosome 7 and therefore everyone has two copies of the salt transport gene. Scientists have called it the CFTR (Cystic Fibrosis Transmembrane Regulator) gene.
Here are some facts about CF:
o CF is the most common life threatening, recessive genetic condition affecting Australian children.
o Symptoms can include poor weight gain, troublesome coughs, repeated chest infections, salty sweat.
o Cystic Fibrosis is a genetic disease that affects a number of organs in the body (especially the lungs and pancreas) by clogging them with thick, sticky mucus.
o Repeated infections and blockages can cause irreversible lung damage and death. Mucus can also cause problems in the pancreas preventing the release of enzymes needed for the digestion of food. This means that people with CF can have problems with nutrition.
o CF is an inherited condition. For a child to be born with CF both parents must be genetic carriers for CF. They do not have CF themselves. See Causes.
o In Australia, all babies are screened at birth for CF.
o At present there is no cure for CF, but the faulty gene has been identified and doctors and scientists are working to find ways of repairing or replacing it. One of the main objectives of the CFA Research Trust is to fund this work.
o With today's improved treatment most people with CF are able to lead reasonably normal and productive lives. A great amount of time is being directed towards finding new and improved ways of treating CF and of finally finding a cure.
So what does all that mean?
Essentially this means that CF patients have decreased lung capacity, and usually have to take pills when they eat. There are issues with weight gain as well as a risk of liver disease and a form of diabetes.
Please explain reduced lung capacity?
Whenever a CF patient goes to the doctor for a check up, they have to do a Spirometry test or lung function test, this is performed by exhaling air into a machine which measures your forced expiratory volume (FEV), this is measured in litres. An average non CF male (who doesn't smoke) will blow an FEV of roughly 4.5 to 5, my recent best is 2.4, my recent worst is 0.9 and I am currently sitting on 2.
How do you get Cystic Fibrosis?
CF is a genetic condition. Therefore it is passed from parents to children in their genes. In other words the only way you can get it is to be born with it, it can't be passed on any other way, some of us are just lucky I guess.
Is there a cure?
Currently there is no cure for CF, however there are various treatments which help extend and improve the life of those with CF.
What kind of treatments?
Most CF patients have to take pills when they eat, as well as both nebulised and oral antibiotics, there are also hospital admissions for "tune ups" the frequency of these admissions vary with each CF patients, they can go from once a month, to once a year, to never.
Wait does this mean people with CF will die early?
Unfortunately overtime CF will wear down certain parts of the body and death can be a result. As a result most CF patients are considered to have a shortened life expectancy, however in Australia with our medical system, this is minimised, as various treatments help reduce the effect of infections.
So how has it affected you?
It has affected me in physical sense due to the fact my body does not create enzymes I have to take pills whenever I eat. It is hard for my body to gain nutrients from food so my weight is a constant issue and it is easy for me to lose weight. Mucus build up in my lungs causes a reduced lung capacity. I also have Cystic related diabetes (which just means I have to have insulin). There is also a social aspect, when I was younger I told a person I had CF and they literally jumped away from me thinking they were going to catch something. Unfortunately things in our childhood tend to affect us throughout our life so as I grew up I kept having CF on the down low. It is only recently when I noticed that all I ever got was support and understanding from friends that I have been more open about it.
How did CF affect your family?
I was 18 months old when I was diagnosed with CF, obviously I can't remember anything about it, but I know from discussions with my mum that it turned her life upside down, in the same week I was diagnosed she was informed I would not live past 2 years old (they were wrong). So their lives had to change. As I grew older there were times when my having CF put a strain on the family life, at times my brothers no doubt resented me for the attention I received, physio, hospital visits etc. I wasn't always perfect, at the age of 13 I went through a rebellious stage of not taking my medication (incidentally this just made me sick.......guh) which put unnecessary pressure on my mum. Overall I would say it did affect my family in some pretty major ways, but I asked mum and she said I was worth it (lol I have to believe this hahaha.)
Should we treat you differently?
NO! CF patients should not be treated any differently than anyone else, besides respect their health issues by not smoking near them. Treat them like everyone else, there are too many parents of CF children who wrap them up in cotton wool (figuratively), which can lead to poor attitudes and poor health.
Have you done anything to help or hinder your CF?
I go to the gym a lot, I train pretty hard and eat a ton of protein and carbs, this helps me put on weight which in turn helps my lungs. The downside is I have not been as consistent with taking all my medication as I should be, but due to the lectures I receive whenever I go to the doctor, I am getting better.
I hope this has helped you understand CF a bit more, if you have any questions that I havent answered here please feel free to ask me.
Cheers
Ash </i>
I recently posted this on my facebook page after a bout in hospital. I got to a point in my life where I realised how much I was hiding my CF, I thought I was being strong as I didn't want people to worry about me or treat me different, but I realised it was just me being scared. So I wrote this note and posted it up for everyone to see and all I have received since is love, support and understanding. The reason I am posting it here is simply because if anyone else is feeling they need to open up more about CF I hope this encourages them to do it, I hope this helps
Cheers
Ash</b>
<i>As some of you may know I have Cystic Fibrosis, for some of you who have known me for a while this may come as a shock as I have never been very forthcoming with information about it. So I thought it was time I started to educate people a little more, this is not some cry for help, nor a request for donations, this is simply an opportunity for me to let you all know a bit more. There is a chance that at one stage in your life you will know someone who has a child with CF, unfortunately all information on the internet is rather depressing, so I thought I would put this up.
What is Cystic Fibrosis?
Cystic Fibrosis (CF) is a recessive genetic condition. The gene involved in CF gives instructions for the cells to make a protein that controls the movement of salt in and out of cells.
This salt transport gene lies on chromosome 7. Everyone has two copies of chromosome 7 and therefore everyone has two copies of the salt transport gene. Scientists have called it the CFTR (Cystic Fibrosis Transmembrane Regulator) gene.
Here are some facts about CF:
o CF is the most common life threatening, recessive genetic condition affecting Australian children.
o Symptoms can include poor weight gain, troublesome coughs, repeated chest infections, salty sweat.
o Cystic Fibrosis is a genetic disease that affects a number of organs in the body (especially the lungs and pancreas) by clogging them with thick, sticky mucus.
o Repeated infections and blockages can cause irreversible lung damage and death. Mucus can also cause problems in the pancreas preventing the release of enzymes needed for the digestion of food. This means that people with CF can have problems with nutrition.
o CF is an inherited condition. For a child to be born with CF both parents must be genetic carriers for CF. They do not have CF themselves. See Causes.
o In Australia, all babies are screened at birth for CF.
o At present there is no cure for CF, but the faulty gene has been identified and doctors and scientists are working to find ways of repairing or replacing it. One of the main objectives of the CFA Research Trust is to fund this work.
o With today's improved treatment most people with CF are able to lead reasonably normal and productive lives. A great amount of time is being directed towards finding new and improved ways of treating CF and of finally finding a cure.
So what does all that mean?
Essentially this means that CF patients have decreased lung capacity, and usually have to take pills when they eat. There are issues with weight gain as well as a risk of liver disease and a form of diabetes.
Please explain reduced lung capacity?
Whenever a CF patient goes to the doctor for a check up, they have to do a Spirometry test or lung function test, this is performed by exhaling air into a machine which measures your forced expiratory volume (FEV), this is measured in litres. An average non CF male (who doesn't smoke) will blow an FEV of roughly 4.5 to 5, my recent best is 2.4, my recent worst is 0.9 and I am currently sitting on 2.
How do you get Cystic Fibrosis?
CF is a genetic condition. Therefore it is passed from parents to children in their genes. In other words the only way you can get it is to be born with it, it can't be passed on any other way, some of us are just lucky I guess.
Is there a cure?
Currently there is no cure for CF, however there are various treatments which help extend and improve the life of those with CF.
What kind of treatments?
Most CF patients have to take pills when they eat, as well as both nebulised and oral antibiotics, there are also hospital admissions for "tune ups" the frequency of these admissions vary with each CF patients, they can go from once a month, to once a year, to never.
Wait does this mean people with CF will die early?
Unfortunately overtime CF will wear down certain parts of the body and death can be a result. As a result most CF patients are considered to have a shortened life expectancy, however in Australia with our medical system, this is minimised, as various treatments help reduce the effect of infections.
So how has it affected you?
It has affected me in physical sense due to the fact my body does not create enzymes I have to take pills whenever I eat. It is hard for my body to gain nutrients from food so my weight is a constant issue and it is easy for me to lose weight. Mucus build up in my lungs causes a reduced lung capacity. I also have Cystic related diabetes (which just means I have to have insulin). There is also a social aspect, when I was younger I told a person I had CF and they literally jumped away from me thinking they were going to catch something. Unfortunately things in our childhood tend to affect us throughout our life so as I grew up I kept having CF on the down low. It is only recently when I noticed that all I ever got was support and understanding from friends that I have been more open about it.
How did CF affect your family?
I was 18 months old when I was diagnosed with CF, obviously I can't remember anything about it, but I know from discussions with my mum that it turned her life upside down, in the same week I was diagnosed she was informed I would not live past 2 years old (they were wrong). So their lives had to change. As I grew older there were times when my having CF put a strain on the family life, at times my brothers no doubt resented me for the attention I received, physio, hospital visits etc. I wasn't always perfect, at the age of 13 I went through a rebellious stage of not taking my medication (incidentally this just made me sick.......guh) which put unnecessary pressure on my mum. Overall I would say it did affect my family in some pretty major ways, but I asked mum and she said I was worth it (lol I have to believe this hahaha.)
Should we treat you differently?
NO! CF patients should not be treated any differently than anyone else, besides respect their health issues by not smoking near them. Treat them like everyone else, there are too many parents of CF children who wrap them up in cotton wool (figuratively), which can lead to poor attitudes and poor health.
Have you done anything to help or hinder your CF?
I go to the gym a lot, I train pretty hard and eat a ton of protein and carbs, this helps me put on weight which in turn helps my lungs. The downside is I have not been as consistent with taking all my medication as I should be, but due to the lectures I receive whenever I go to the doctor, I am getting better.
I hope this has helped you understand CF a bit more, if you have any questions that I havent answered here please feel free to ask me.
Cheers
Ash </i>