Teens wcf - to Cindy

[Guest guest]

I found your email very interesting. My Granddaughter wcf is still a

baby, but I have a friend who's son is 17 and is doing the same thing

as your son. He lost 5 pounds and says things like, " What's the

use? " It's really hard on his mom. I think that is a tough age for

everyone and tougher yet if you are dealing wcf. I hope that someone

on this list can give you some great advice.

Gale - Also in Ohio

> 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

>

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