Re: my usual diatribe on age of cf patients

[Guest guest]

Cindy,

There is a book titled " Alive at 25 " by Andy Lipman. It is very good and I

think teenagers, esp. boys, might find it helpful. When Andy was diagnosed

his parents were told he wouldn't make it to 25. Well, he made it and is

very healthy now at about 28. He started writing the book on his 25th

birthday and tells about all he went through in school and college, feeling

different, and learning to deal with cf. He runs an annual softball

tournament in Atlanta to raise money for CFF.

I got the book through Amazon.com on the internet.

Angie (mom to JC, 2.5 yo, wcf)

Re: my usual diatribe on age of cf patients

> Thank you for the encouragement and for letting us younger mothers know

there is hope and to listen and follow our hearts and not always what the

doctors say. I feel that it is a detriment to cf patients to be given a time

table, my son turned 18 and now seems very sad like he heard this age thing

and now is faced with a number. He has always been relatively healthy and

now i see him loosing weight and having a whole different demeanor. I am

going to have him read this post so that he can see their are older people

living their lives with cf. Thanks for the eye opener A mom in Ohio

>

>

[Guest guest]

Thank you for the encouragement and for letting us younger mothers know there is

hope and to listen and follow our hearts and not always what the doctors say. I

feel that it is a detriment to cf patients to be given a time table, my son

turned 18 and now seems very sad like he heard this age thing and now is faced

with a number. He has always been relatively healthy and now i see him loosing

weight and having a whole different demeanor. I am going to have him read this

post so that he can see their are older people living their lives with cf.

Thanks for the eye opener A mom in Ohio

my usual diatribe on age of cf patients

Those of us in our 60's fifties, and even forties are seldom counted in

any census of us; we are " invisible, " in the words of a 58-year-old frien

d who has cf; there are many with cf in their seventies as well, including

the founder of one of the cystic fibrosis lists, one in North Carolina lis

ted in Beverley Donelson's journal, The Informer, under the Pen Pal

Section; she is now about 78, no longer uses the phone nor e-mails,

but enjoys letters sent to her. She was diagnosed at 52, had two child

ren who are still living and her husband is still living (nocf), and she has\

many grandchildren. She was ill all her life, as most who are eventually

diuagnosed have been. I myself have known two adult males with cf who died

at age 82, having been diagnosed at about age 44, after ma

ny years of illness. I cannot count those I know who are in their sixties,

as am I, and in their early seventies. There is indeed hope for children

borth with cystic fibrosis in the modern era.

n Rojas

[Guest guest]

Thank you for the encouragement and for letting us younger mothers know there is

hope and to listen and follow our hearts and not always what the doctors say. I

feel that it is a detriment to cf patients to be given a time table, my son

turned 18 and now seems very sad like he heard this age thing and now is faced

with a number. He has always been relatively healthy and now i see him loosing

weight and having a whole different demeanor. I am going to have him read this

post so that he can see their are older people living their lives with cf.

Thanks for the eye opener A mom in Ohio

my usual diatribe on age of cf patients

Those of us in our 60's fifties, and even forties are seldom counted in

any census of us; we are " invisible, " in the words of a 58-year-old frien

d who has cf; there are many with cf in their seventies as well, including

the founder of one of the cystic fibrosis lists, one in North Carolina lis

ted in Beverley Donelson's journal, The Informer, under the Pen Pal

Section; she is now about 78, no longer uses the phone nor e-mails,

but enjoys letters sent to her. She was diagnosed at 52, had two child

ren who are still living and her husband is still living (nocf), and she has\

many grandchildren. She was ill all her life, as most who are eventually

diuagnosed have been. I myself have known two adult males with cf who died

at age 82, having been diagnosed at about age 44, after ma

ny years of illness. I cannot count those I know who are in their sixties,

as am I, and in their early seventies. There is indeed hope for children

borth with cystic fibrosis in the modern era.

n Rojas

[Guest guest]

Thank you for the encouragement and for letting us younger mothers know there is

hope and to listen and follow our hearts and not always what the doctors say. I

feel that it is a detriment to cf patients to be given a time table, my son

turned 18 and now seems very sad like he heard this age thing and now is faced

with a number. He has always been relatively healthy and now i see him loosing

weight and having a whole different demeanor. I am going to have him read this

post so that he can see their are older people living their lives with cf.

Thanks for the eye opener A mom in Ohio

my usual diatribe on age of cf patients

Those of us in our 60's fifties, and even forties are seldom counted in

any census of us; we are " invisible, " in the words of a 58-year-old frien

d who has cf; there are many with cf in their seventies as well, including

the founder of one of the cystic fibrosis lists, one in North Carolina lis

ted in Beverley Donelson's journal, The Informer, under the Pen Pal

Section; she is now about 78, no longer uses the phone nor e-mails,

but enjoys letters sent to her. She was diagnosed at 52, had two child

ren who are still living and her husband is still living (nocf), and she has\

many grandchildren. She was ill all her life, as most who are eventually

diuagnosed have been. I myself have known two adult males with cf who died

at age 82, having been diagnosed at about age 44, after ma

ny years of illness. I cannot count those I know who are in their sixties,

as am I, and in their early seventies. There is indeed hope for children

borth with cystic fibrosis in the modern era.

n Rojas

[Guest guest]

Angie Thank you so much for the book title, I work right next to a and

Noble and will pick it up tomorrow. My does very well, but I just think

sometimes it is hard for him to talk to anyone. Cindy

Re: my usual diatribe on age of cf patients

> Thank you for the encouragement and for letting us younger mothers know

there is hope and to listen and follow our hearts and not always what the

doctors say. I feel that it is a detriment to cf patients to be given a time

table, my son turned 18 and now seems very sad like he heard this age thing

and now is faced with a number. He has always been relatively healthy and

now i see him loosing weight and having a whole different demeanor. I am

going to have him read this post so that he can see their are older people

living their lives with cf. Thanks for the eye opener A mom in Ohio

>

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