Do you have friends with CF?

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kneppbrandon

Guest
Hi, I'm new to this and I have just been doing some thinking. I'm 21 years old and I have Cystic Fibrosis. I have never in my life met anyone with CF other than myself. I have always felt alone in my own little world and I feel because of my CF, I have always been a loner. I was just curious to see how many CF patients out there actually know or are good friends with someone with CF. I guess this gets me on the right path to getting connected. I just don't want to feel alone anymore and I know I'm not.
 
K

kneppbrandon

Guest
Hi, I'm new to this and I have just been doing some thinking. I'm 21 years old and I have Cystic Fibrosis. I have never in my life met anyone with CF other than myself. I have always felt alone in my own little world and I feel because of my CF, I have always been a loner. I was just curious to see how many CF patients out there actually know or are good friends with someone with CF. I guess this gets me on the right path to getting connected. I just don't want to feel alone anymore and I know I'm not.
 
K

kneppbrandon

Guest
Hi, I'm new to this and I have just been doing some thinking. I'm 21 years old and I have Cystic Fibrosis. I have never in my life met anyone with CF other than myself. I have always felt alone in my own little world and I feel because of my CF, I have always been a loner. I was just curious to see how many CF patients out there actually know or are good friends with someone with CF. I guess this gets me on the right path to getting connected. I just don't want to feel alone anymore and I know I'm not.
 
M

mag6125

New member
Well you are not alone in that feeling, I am 22 and up until 3 months ago I didn't have any cf friends either. It wasn't until I was contacted by a fellow cfer who read a news article about me waiting for transplant that I made any friends and now I have a lot that I talk to online and 5 that I actually know in person. But this forum is a good place to meet people who give good advice and you can add me on Facebook if you want. Shelly Green mag6125@yahoo.com. Feel free to email me to if you ever need someone to talk to
 
M

mag6125

New member
Well you are not alone in that feeling, I am 22 and up until 3 months ago I didn't have any cf friends either. It wasn't until I was contacted by a fellow cfer who read a news article about me waiting for transplant that I made any friends and now I have a lot that I talk to online and 5 that I actually know in person. But this forum is a good place to meet people who give good advice and you can add me on Facebook if you want. Shelly Green mag6125@yahoo.com. Feel free to email me to if you ever need someone to talk to
 
M

mag6125

New member
Well you are not alone in that feeling, I am 22 and up until 3 months ago I didn't have any cf friends either. It wasn't until I was contacted by a fellow cfer who read a news article about me waiting for transplant that I made any friends and now I have a lot that I talk to online and 5 that I actually know in person. But this forum is a good place to meet people who give good advice and you can add me on Facebook if you want. Shelly Green mag6125@yahoo.com. Feel free to email me to if you ever need someone to talk to
 
A

AimeeSue82

New member
I'm 28 and when I was a kid (before they knew about cross contamination) I went to a week long summer camp for CF kids. It was great in some respects because for one week a year I wasn't weird. However it was torture because every year we'd come back and one or two of our friends would have passed away over the winter. We had a memorial garden and would plant a new plant of everyone that died, I think it taught a lot of us how precious life is from an early age. Nowadays, the CF Foundation says to stay at least 3 feet away from someone else with CF so as not to pass bugs to each other. However I have several friends that I know personally, mostly from the hospital, but one I just happened to move in next door to! This is a great forum to talk to other CFers if there aren't any others around you. Just because we can't go get coffee or something, doesn't mean we can't be friends, ya know? You can email me any time you want or I'm on facebook too.

~Aimee, 28 w/ CF (PA & MRSA)
AimeeSue82@yahoo.com
<a target=_blank class=ftalternatingbarlinklarge href="http://www.facebook.com/#!/aimeesue82">http://www.facebook.com/#!/aimeesue82</a>
 
A

AimeeSue82

New member
I'm 28 and when I was a kid (before they knew about cross contamination) I went to a week long summer camp for CF kids. It was great in some respects because for one week a year I wasn't weird. However it was torture because every year we'd come back and one or two of our friends would have passed away over the winter. We had a memorial garden and would plant a new plant of everyone that died, I think it taught a lot of us how precious life is from an early age. Nowadays, the CF Foundation says to stay at least 3 feet away from someone else with CF so as not to pass bugs to each other. However I have several friends that I know personally, mostly from the hospital, but one I just happened to move in next door to! This is a great forum to talk to other CFers if there aren't any others around you. Just because we can't go get coffee or something, doesn't mean we can't be friends, ya know? You can email me any time you want or I'm on facebook too.

~Aimee, 28 w/ CF (PA & MRSA)
AimeeSue82@yahoo.com
<a target=_blank class=ftalternatingbarlinklarge href="http://www.facebook.com/#!/aimeesue82">http://www.facebook.com/#!/aimeesue82</a>
 
A

AimeeSue82

New member
I'm 28 and when I was a kid (before they knew about cross contamination) I went to a week long summer camp for CF kids. It was great in some respects because for one week a year I wasn't weird. However it was torture because every year we'd come back and one or two of our friends would have passed away over the winter. We had a memorial garden and would plant a new plant of everyone that died, I think it taught a lot of us how precious life is from an early age. Nowadays, the CF Foundation says to stay at least 3 feet away from someone else with CF so as not to pass bugs to each other. However I have several friends that I know personally, mostly from the hospital, but one I just happened to move in next door to! This is a great forum to talk to other CFers if there aren't any others around you. Just because we can't go get coffee or something, doesn't mean we can't be friends, ya know? You can email me any time you want or I'm on facebook too.
<br />
<br />~Aimee, 28 w/ CF (PA & MRSA)
<br />AimeeSue82@yahoo.com
<br /><a target=_blank class=ftalternatingbarlinklarge href="http://www.facebook.com/#!/aimeesue82">http://www.facebook.com/#!/aimeesue82</a>
 
H

Havoc

New member
I have several (and a cousin). I have met 2 in person, and we took as many precautions as possible (we both are also not that sick). I typically like to have non-CF friends. Although it's nice to know someone understands what you go through, I try not to dwell on my illness.
 
H

Havoc

New member
I have several (and a cousin). I have met 2 in person, and we took as many precautions as possible (we both are also not that sick). I typically like to have non-CF friends. Although it's nice to know someone understands what you go through, I try not to dwell on my illness.
 
H

Havoc

New member
I have several (and a cousin). I have met 2 in person, and we took as many precautions as possible (we both are also not that sick). I typically like to have non-CF friends. Although it's nice to know someone understands what you go through, I try not to dwell on my illness.
 
C

CFkitty

New member
I only know one person with CF "in person", but haven't seen her in at least fifteen years. The rest are online friends.

Growing up, playing with other CF kids was greatly discouraged. I've been old that the reason support groups don't exist due to the risk of cross-contamination.

It's weird to me to hear that people have made friends with other CF patients when in-patient because whenever I ask my doctors if there is anyone else with CF on the floor at the time, they might answer yes, but refuse to relay a message that if the person wants to meet, I would love to do so. It would have made my stays somewhat more bearable, having someone go through the same thing as me, to commiserate with, or just have someone to hang around with.

Indeed, not knowing anyone else with CF can make you feel as if you're the only one out there.

As for "regular" friends, I find that many do not or cannot deal with my disease, and therefore keep themselves at a distance.
 
C

CFkitty

New member
I only know one person with CF "in person", but haven't seen her in at least fifteen years. The rest are online friends.

Growing up, playing with other CF kids was greatly discouraged. I've been old that the reason support groups don't exist due to the risk of cross-contamination.

It's weird to me to hear that people have made friends with other CF patients when in-patient because whenever I ask my doctors if there is anyone else with CF on the floor at the time, they might answer yes, but refuse to relay a message that if the person wants to meet, I would love to do so. It would have made my stays somewhat more bearable, having someone go through the same thing as me, to commiserate with, or just have someone to hang around with.

Indeed, not knowing anyone else with CF can make you feel as if you're the only one out there.

As for "regular" friends, I find that many do not or cannot deal with my disease, and therefore keep themselves at a distance.
 
C

CFkitty

New member
I only know one person with CF "in person", but haven't seen her in at least fifteen years. The rest are online friends.
<br />
<br />Growing up, playing with other CF kids was greatly discouraged. I've been old that the reason support groups don't exist due to the risk of cross-contamination.
<br />
<br />It's weird to me to hear that people have made friends with other CF patients when in-patient because whenever I ask my doctors if there is anyone else with CF on the floor at the time, they might answer yes, but refuse to relay a message that if the person wants to meet, I would love to do so. It would have made my stays somewhat more bearable, having someone go through the same thing as me, to commiserate with, or just have someone to hang around with.
<br />
<br />Indeed, not knowing anyone else with CF can make you feel as if you're the only one out there.
<br />
<br />As for "regular" friends, I find that many do not or cannot deal with my disease, and therefore keep themselves at a distance.
 
S

Solo

New member
Well from recent memory, I can only recall 1 meeting with another person with CF. It was at the hospital, and we only spoke for about 10 minutes...across the room. Like you kneppbrandon, I feel very alone. But I'm not down about it, I keep myself occupied. I have all non-CF friends, and many wouldn't even know I had CF, because in my experience, ppl treat you differently; kind of like you're a charity case or something. I can basically do everything anybody else can do, I just have to go the extra mile, every MILE. I'm not gonna lie, sometimes I get sick and tired of just being sick and tired, but I believe we all have a special destiny; we are all very special ppl.
 
S

Solo

New member
Well from recent memory, I can only recall 1 meeting with another person with CF. It was at the hospital, and we only spoke for about 10 minutes...across the room. Like you kneppbrandon, I feel very alone. But I'm not down about it, I keep myself occupied. I have all non-CF friends, and many wouldn't even know I had CF, because in my experience, ppl treat you differently; kind of like you're a charity case or something. I can basically do everything anybody else can do, I just have to go the extra mile, every MILE. I'm not gonna lie, sometimes I get sick and tired of just being sick and tired, but I believe we all have a special destiny; we are all very special ppl.
 
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