Page 24 - CF Roundtable - Winter/Spring 2026

VOICES FROM THE ROUNDTABLE
By: Norma Jean Lindsey
IT’S BEEN A LONG
JOURNEY, BUT I MADE IT TO 81!
I had my 81st birthday this past October 20th. I had been
looking forward to this special birthday for a long time. I
remember as a teen telling a friend that I didn’t think that
I would live to be 40 and now I’ve more than doubled that
lifetime expectancy!
As a teen, I didn’t know why I was always so sick. I was
not diagnosed until I was 53, probably because one of my
chromosomes is an undetected CFTR mutation or DNA
variant (IVS8-5T) while the other is the F508del. Nature ran
an article about the clinical consequences of the 5T variant
several decades ago . The IVS8-5T variant causes, among
other things, severe sinusitis.
In 1997, at the age of 53, my ENT said I was fine after yet
another surgery, but I knew I wasn’t fine. As I sat in the
patient chair I started crying because I knew something was
very wrong. He told me that I was still young so he would
send me to the Hospital of the University of Pennsylvania
in Philadelphia near where we lived at that time. The day I
saw the ENT specialist, Dr. Lanza, he immediately suspected
I had CF. He ordered my first ever culture which showed
Pseudomonas, MRSA, and a few other bacteria. He also
ordered my first CT scan which showed the extent of
malformation of my sinuses. He then ordered a sweat test,
which was done at the Children’s Hospital of Pennsylvania
because they don’t diagnose adults with CF. The sweat test
was overwhelmingly positive and confirmed the diagnosis. I
was put on gentamicin and another IV for my infection but
this permanently damaged my inner ear sense of balance.
In 2010 I had a frontal sinus obliteration, which finally
eradicated most of the bacteria. During this surgery, my
scalp was cut ear to ear and pulled down to expose the
frontal sinuses so that I would not have a scar visible on my
face. The surgeon used a diamond drill bit to excavate the
sinus cavity and infection. The empty space was then filled
with disinfected fat from my abdomen. I had many friends
offer to donate their fat as well for this procedure but the
surgeon did not get the joke.
My proudest achievement was answering the call to start a
CF Walk for a Cure in 2007 in McAllen, Texas where we then
lived because the warmer weather was better for my health.
I’m so proud of all those who came to support me. We raised
tens of thousands of dollars each year. I connected with
so many CF families with the same drive to find a cure. I’m
proud to say that all these years later, even after we moved
to Atlanta in 2013 to be near family, this walk continues to be
very successful.
Now with the advances in CF care—especially with newborn
screenings and new CFTR modulators like Trikafta—I hope
those with CF will have more normal lives. I hope to be
a model for others—they too can survive CF with near normal
lives and live a good life without a short life expectancy just
by doing their life-saving treatments and taking their meds.
24 CF Roundtable Winter/Spring 2026