Hi everyone. I found this site today and it looks very informative and supportive. I am the aunt of 2 nieces with CF. One who is 19 and not doing too well. The other 17 is completely opposite and seems, acts and looks like a totally healthy girl. Just wondering how 2 sisters with the same disease can be two worlds apart. Any thoughts? I know I'm not a young adult/teenagers in this forum but you are their ages so who best to know what they are experiencing?
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Aunt of 19 and 17 yr old nieces with CF
- Thread starter ratay13
- Start date
Hi everyone. I found this site today and it looks very informative and supportive. I am the aunt of 2 nieces with CF. One who is 19 and not doing too well. The other 17 is completely opposite and seems, acts and looks like a totally healthy girl. Just wondering how 2 sisters with the same disease can be two worlds apart. Any thoughts? I know I'm not a young adult/teenagers in this forum but you are their ages so who best to know what they are experiencing?
Hi everyone. I found this site today and it looks very informative and supportive. I am the aunt of 2 nieces with CF. One who is 19 and not doing too well. The other 17 is completely opposite and seems, acts and looks like a totally healthy girl. Just wondering how 2 sisters with the same disease can be two worlds apart. Any thoughts? I know I'm not a young adult/teenagers in this forum but you are their ages so who best to know what they are experiencing?
Hi everyone. I found this site today and it looks very informative and supportive. I am the aunt of 2 nieces with CF. One who is 19 and not doing too well. The other 17 is completely opposite and seems, acts and looks like a totally healthy girl. Just wondering how 2 sisters with the same disease can be two worlds apart. Any thoughts? I know I'm not a young adult/teenagers in this forum but you are their ages so who best to know what they are experiencing?
Hi everyone. I found this site today and it looks very informative and supportive. I am the aunt of 2 nieces with CF. One who is 19 and not doing too well. The other 17 is completely opposite and seems, acts and looks like a totally healthy girl. Just wondering how 2 sisters with the same disease can be two worlds apart. Any thoughts? I know I'm not a young adult/teenagers in this forum but you are their ages so who best to know what they are experiencing?
CF is funny, and siblings often have very different presentations. I had a brother die very young, one who has no symptoms and i've got moderate CF. Luck of the draw.
I think it has something to do with modifier somethings within the mutations.
CF in general is very different from person to person. No one's disease is the same, just like 2 people with athsma are not the same.
I think it has something to do with modifier somethings within the mutations.
CF in general is very different from person to person. No one's disease is the same, just like 2 people with athsma are not the same.
CF is funny, and siblings often have very different presentations. I had a brother die very young, one who has no symptoms and i've got moderate CF. Luck of the draw.
I think it has something to do with modifier somethings within the mutations.
CF in general is very different from person to person. No one's disease is the same, just like 2 people with athsma are not the same.
I think it has something to do with modifier somethings within the mutations.
CF in general is very different from person to person. No one's disease is the same, just like 2 people with athsma are not the same.
CF is funny, and siblings often have very different presentations. I had a brother die very young, one who has no symptoms and i've got moderate CF. Luck of the draw.
I think it has something to do with modifier somethings within the mutations.
CF in general is very different from person to person. No one's disease is the same, just like 2 people with athsma are not the same.
I think it has something to do with modifier somethings within the mutations.
CF in general is very different from person to person. No one's disease is the same, just like 2 people with athsma are not the same.
CF is funny, and siblings often have very different presentations. I had a brother die very young, one who has no symptoms and i've got moderate CF. Luck of the draw.
I think it has something to do with modifier somethings within the mutations.
CF in general is very different from person to person. No one's disease is the same, just like 2 people with athsma are not the same.
I think it has something to do with modifier somethings within the mutations.
CF in general is very different from person to person. No one's disease is the same, just like 2 people with athsma are not the same.
CF is funny, and siblings often have very different presentations. I had a brother die very young, one who has no symptoms and i've got moderate CF. Luck of the draw.
I think it has something to do with modifier somethings within the mutations.
CF in general is very different from person to person. No one's disease is the same, just like 2 people with athsma are not the same.
I think it has something to do with modifier somethings within the mutations.
CF in general is very different from person to person. No one's disease is the same, just like 2 people with athsma are not the same.
Hi Anna and thank you for the reply. I'm sorry about your younger brother. I don't know what you mean about moderate CF I assume that you get sick more often than my youngest niece. Does how early it's discovered that you have CF have a major factor in how well you are? I know Meagan (19) was discovered around the age of 2 and Jenna (17) at birth. Could that be a factor as to why she is so sick?
Hi Anna and thank you for the reply. I'm sorry about your younger brother. I don't know what you mean about moderate CF I assume that you get sick more often than my youngest niece. Does how early it's discovered that you have CF have a major factor in how well you are? I know Meagan (19) was discovered around the age of 2 and Jenna (17) at birth. Could that be a factor as to why she is so sick?
Hi Anna and thank you for the reply. I'm sorry about your younger brother. I don't know what you mean about moderate CF I assume that you get sick more often than my youngest niece. Does how early it's discovered that you have CF have a major factor in how well you are? I know Meagan (19) was discovered around the age of 2 and Jenna (17) at birth. Could that be a factor as to why she is so sick?
Hi Anna and thank you for the reply. I'm sorry about your younger brother. I don't know what you mean about moderate CF I assume that you get sick more often than my youngest niece. Does how early it's discovered that you have CF have a major factor in how well you are? I know Meagan (19) was discovered around the age of 2 and Jenna (17) at birth. Could that be a factor as to why she is so sick?
Hi Anna and thank you for the reply. I'm sorry about your younger brother. I don't know what you mean about moderate CF I assume that you get sick more often than my youngest niece. Does how early it's discovered that you have CF have a major factor in how well you are? I know Meagan (19) was discovered around the age of 2 and Jenna (17) at birth. Could that be a factor as to why she is so sick?
Lance2020x
New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>ratay13</b></i>
Hi everyone. I found this site today and it looks very informative and supportive. I am the aunt of 2 nieces with CF. One who is 19 and not doing too well. The other 17 is completely opposite and seems, acts and looks like a totally healthy girl. Just wondering how 2 sisters with the same disease can be two worlds apart. Any thoughts? I know I'm not a young adult/teenagers in this forum but you are their ages so who best to know what they are experiencing?</end quote></div>
This is something I've asked the doctors about, and they just say "Well, honestly we're still trying to figure that out ourselves."
My brother an I both have CF, both have the same mutation and both are completely different.
He has a lot of lung problems, he's been hospitalized about twice as much as I have and has coughed up blood regularly.
But he has a stomach like a ROCK, takes about 5 enzymes with meals and hardly ever has gas.
I've always had really high lung functions and have only been hospitalized (due to lungs) a few times. I've never coughed up blood.
However I take 12 enzymes with meals, have been hospitalized for digestive problems and pretty much have gas non-stop.
We also have dealt with our CF SO different, in the way we take care of ourselves, in the way we talk about our CF and especially the way we psychologically face our CF.... it's so strange...
Hi everyone. I found this site today and it looks very informative and supportive. I am the aunt of 2 nieces with CF. One who is 19 and not doing too well. The other 17 is completely opposite and seems, acts and looks like a totally healthy girl. Just wondering how 2 sisters with the same disease can be two worlds apart. Any thoughts? I know I'm not a young adult/teenagers in this forum but you are their ages so who best to know what they are experiencing?</end quote></div>
This is something I've asked the doctors about, and they just say "Well, honestly we're still trying to figure that out ourselves."
My brother an I both have CF, both have the same mutation and both are completely different.
He has a lot of lung problems, he's been hospitalized about twice as much as I have and has coughed up blood regularly.
But he has a stomach like a ROCK, takes about 5 enzymes with meals and hardly ever has gas.
I've always had really high lung functions and have only been hospitalized (due to lungs) a few times. I've never coughed up blood.
However I take 12 enzymes with meals, have been hospitalized for digestive problems and pretty much have gas non-stop.
We also have dealt with our CF SO different, in the way we take care of ourselves, in the way we talk about our CF and especially the way we psychologically face our CF.... it's so strange...
Lance2020x
New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>ratay13</b></i>
Hi everyone. I found this site today and it looks very informative and supportive. I am the aunt of 2 nieces with CF. One who is 19 and not doing too well. The other 17 is completely opposite and seems, acts and looks like a totally healthy girl. Just wondering how 2 sisters with the same disease can be two worlds apart. Any thoughts? I know I'm not a young adult/teenagers in this forum but you are their ages so who best to know what they are experiencing?</end quote></div>
This is something I've asked the doctors about, and they just say "Well, honestly we're still trying to figure that out ourselves."
My brother an I both have CF, both have the same mutation and both are completely different.
He has a lot of lung problems, he's been hospitalized about twice as much as I have and has coughed up blood regularly.
But he has a stomach like a ROCK, takes about 5 enzymes with meals and hardly ever has gas.
I've always had really high lung functions and have only been hospitalized (due to lungs) a few times. I've never coughed up blood.
However I take 12 enzymes with meals, have been hospitalized for digestive problems and pretty much have gas non-stop.
We also have dealt with our CF SO different, in the way we take care of ourselves, in the way we talk about our CF and especially the way we psychologically face our CF.... it's so strange...
Hi everyone. I found this site today and it looks very informative and supportive. I am the aunt of 2 nieces with CF. One who is 19 and not doing too well. The other 17 is completely opposite and seems, acts and looks like a totally healthy girl. Just wondering how 2 sisters with the same disease can be two worlds apart. Any thoughts? I know I'm not a young adult/teenagers in this forum but you are their ages so who best to know what they are experiencing?</end quote></div>
This is something I've asked the doctors about, and they just say "Well, honestly we're still trying to figure that out ourselves."
My brother an I both have CF, both have the same mutation and both are completely different.
He has a lot of lung problems, he's been hospitalized about twice as much as I have and has coughed up blood regularly.
But he has a stomach like a ROCK, takes about 5 enzymes with meals and hardly ever has gas.
I've always had really high lung functions and have only been hospitalized (due to lungs) a few times. I've never coughed up blood.
However I take 12 enzymes with meals, have been hospitalized for digestive problems and pretty much have gas non-stop.
We also have dealt with our CF SO different, in the way we take care of ourselves, in the way we talk about our CF and especially the way we psychologically face our CF.... it's so strange...
Lance2020x
New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>ratay13</b></i>
Hi everyone. I found this site today and it looks very informative and supportive. I am the aunt of 2 nieces with CF. One who is 19 and not doing too well. The other 17 is completely opposite and seems, acts and looks like a totally healthy girl. Just wondering how 2 sisters with the same disease can be two worlds apart. Any thoughts? I know I'm not a young adult/teenagers in this forum but you are their ages so who best to know what they are experiencing?</end quote></div>
This is something I've asked the doctors about, and they just say "Well, honestly we're still trying to figure that out ourselves."
My brother an I both have CF, both have the same mutation and both are completely different.
He has a lot of lung problems, he's been hospitalized about twice as much as I have and has coughed up blood regularly.
But he has a stomach like a ROCK, takes about 5 enzymes with meals and hardly ever has gas.
I've always had really high lung functions and have only been hospitalized (due to lungs) a few times. I've never coughed up blood.
However I take 12 enzymes with meals, have been hospitalized for digestive problems and pretty much have gas non-stop.
We also have dealt with our CF SO different, in the way we take care of ourselves, in the way we talk about our CF and especially the way we psychologically face our CF.... it's so strange...
Hi everyone. I found this site today and it looks very informative and supportive. I am the aunt of 2 nieces with CF. One who is 19 and not doing too well. The other 17 is completely opposite and seems, acts and looks like a totally healthy girl. Just wondering how 2 sisters with the same disease can be two worlds apart. Any thoughts? I know I'm not a young adult/teenagers in this forum but you are their ages so who best to know what they are experiencing?</end quote></div>
This is something I've asked the doctors about, and they just say "Well, honestly we're still trying to figure that out ourselves."
My brother an I both have CF, both have the same mutation and both are completely different.
He has a lot of lung problems, he's been hospitalized about twice as much as I have and has coughed up blood regularly.
But he has a stomach like a ROCK, takes about 5 enzymes with meals and hardly ever has gas.
I've always had really high lung functions and have only been hospitalized (due to lungs) a few times. I've never coughed up blood.
However I take 12 enzymes with meals, have been hospitalized for digestive problems and pretty much have gas non-stop.
We also have dealt with our CF SO different, in the way we take care of ourselves, in the way we talk about our CF and especially the way we psychologically face our CF.... it's so strange...
Lance2020x
New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>ratay13</b></i>
Hi everyone. I found this site today and it looks very informative and supportive. I am the aunt of 2 nieces with CF. One who is 19 and not doing too well. The other 17 is completely opposite and seems, acts and looks like a totally healthy girl. Just wondering how 2 sisters with the same disease can be two worlds apart. Any thoughts? I know I'm not a young adult/teenagers in this forum but you are their ages so who best to know what they are experiencing?</end quote>
This is something I've asked the doctors about, and they just say "Well, honestly we're still trying to figure that out ourselves."
My brother an I both have CF, both have the same mutation and both are completely different.
He has a lot of lung problems, he's been hospitalized about twice as much as I have and has coughed up blood regularly.
But he has a stomach like a ROCK, takes about 5 enzymes with meals and hardly ever has gas.
I've always had really high lung functions and have only been hospitalized (due to lungs) a few times. I've never coughed up blood.
However I take 12 enzymes with meals, have been hospitalized for digestive problems and pretty much have gas non-stop.
We also have dealt with our CF SO different, in the way we take care of ourselves, in the way we talk about our CF and especially the way we psychologically face our CF.... it's so strange...
Hi everyone. I found this site today and it looks very informative and supportive. I am the aunt of 2 nieces with CF. One who is 19 and not doing too well. The other 17 is completely opposite and seems, acts and looks like a totally healthy girl. Just wondering how 2 sisters with the same disease can be two worlds apart. Any thoughts? I know I'm not a young adult/teenagers in this forum but you are their ages so who best to know what they are experiencing?</end quote>
This is something I've asked the doctors about, and they just say "Well, honestly we're still trying to figure that out ourselves."
My brother an I both have CF, both have the same mutation and both are completely different.
He has a lot of lung problems, he's been hospitalized about twice as much as I have and has coughed up blood regularly.
But he has a stomach like a ROCK, takes about 5 enzymes with meals and hardly ever has gas.
I've always had really high lung functions and have only been hospitalized (due to lungs) a few times. I've never coughed up blood.
However I take 12 enzymes with meals, have been hospitalized for digestive problems and pretty much have gas non-stop.
We also have dealt with our CF SO different, in the way we take care of ourselves, in the way we talk about our CF and especially the way we psychologically face our CF.... it's so strange...
Lance2020x
New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>ratay13</b></i>
Hi everyone. I found this site today and it looks very informative and supportive. I am the aunt of 2 nieces with CF. One who is 19 and not doing too well. The other 17 is completely opposite and seems, acts and looks like a totally healthy girl. Just wondering how 2 sisters with the same disease can be two worlds apart. Any thoughts? I know I'm not a young adult/teenagers in this forum but you are their ages so who best to know what they are experiencing?</end quote>
This is something I've asked the doctors about, and they just say "Well, honestly we're still trying to figure that out ourselves."
My brother an I both have CF, both have the same mutation and both are completely different.
He has a lot of lung problems, he's been hospitalized about twice as much as I have and has coughed up blood regularly.
But he has a stomach like a ROCK, takes about 5 enzymes with meals and hardly ever has gas.
I've always had really high lung functions and have only been hospitalized (due to lungs) a few times. I've never coughed up blood.
However I take 12 enzymes with meals, have been hospitalized for digestive problems and pretty much have gas non-stop.
We also have dealt with our CF SO different, in the way we take care of ourselves, in the way we talk about our CF and especially the way we psychologically face our CF.... it's so strange...
Hi everyone. I found this site today and it looks very informative and supportive. I am the aunt of 2 nieces with CF. One who is 19 and not doing too well. The other 17 is completely opposite and seems, acts and looks like a totally healthy girl. Just wondering how 2 sisters with the same disease can be two worlds apart. Any thoughts? I know I'm not a young adult/teenagers in this forum but you are their ages so who best to know what they are experiencing?</end quote>
This is something I've asked the doctors about, and they just say "Well, honestly we're still trying to figure that out ourselves."
My brother an I both have CF, both have the same mutation and both are completely different.
He has a lot of lung problems, he's been hospitalized about twice as much as I have and has coughed up blood regularly.
But he has a stomach like a ROCK, takes about 5 enzymes with meals and hardly ever has gas.
I've always had really high lung functions and have only been hospitalized (due to lungs) a few times. I've never coughed up blood.
However I take 12 enzymes with meals, have been hospitalized for digestive problems and pretty much have gas non-stop.
We also have dealt with our CF SO different, in the way we take care of ourselves, in the way we talk about our CF and especially the way we psychologically face our CF.... it's so strange...