Re: Becoming Elderly with CF

December 17, 2003

Hal,

That is so right about the stats...I contend that there are hundreds of

folks in their 60-70 '

& the reason they aren't counted for is they mostly don't attend CFF

clinics . Therefore, are missed being " counted " . I know quite a few,

some here on the lists that I am on, & they never have attended a

clinic. They have gone to their local pulmo folks/groups & as you said,

they have different make-ups....genetics that help them stay well.

As old as I am ,(71+), I have NEVER even had the measles. nor have my

kids(5 of them) .We all never missed school attendance either due to

illness. Of course none of us except ERIN has CF-- Soooooooooooo, Good

diets, treatment , all that you mentioned do help , of course, but there

are other factors. Most folks really take great care & do all the things

they are told, & still get sick . BUGS are MEAN... & pick on people,-I

think we ought to outlaw them .hehee.

By the way, we have all kinds of drugs & alternative meds here. I could

fly all the time-hahahehehe.

LOVE & HUGS,

grandmoMBEV

This is why I really don't like an EXPECTED life line printed anywhere.

Take each day as it comes, take care of that temple we walk around it.

.........the best we can....

Becoming Elderly with CF

Bev and n have known me for years. Bev is so upbeat I wonder what

they have at the CF pharmacy in Orlando that keeps her so happy. n

likes to keep me around, as I make her look and feel young. Being the

focus of a CF support list is momentary.a fifteen seconds of fame

undeserved. As more information becomes available that there are

hundreds if not thousands of people with CF who have survived into their

60's and 70's, the concentration will get away from statistics that are

meaningless. The 30 odd years of survival as a statistic has no effect

on whether or not you are getting the proper medical care, diet and the

love everyone needs to survive. A statistic can actually frighten a

person with CF into thinking their demise is impending. (I was actually

given only three years to live when I was diagnosed. To the joy of the

IRS, I'm still around). The CFF and I have gone many rounds on this, but

they want to raise money.you now know what I think of their statistics!

Hal

December 17, 2003

Hal, thank you for this one! I actually know MORE persons in my family and

friends who are OVER 55 wcf than under--that is in three-dimensional

existence--off line, and do Pico (hope I have this physician's first name

right) of the Madison, Wisconson, usa cf center told me that they have so many

persons over sixty in their center that he cannot even count them. I find that

believable; the last one older whom I met at Stanford was 72. I think that as

his

his custom, Hal makes a very valuable point which all parents of children with

cf

(and I have one) should keep in mind!

Appreciatively,

n Rojas