From a family devastated by an understudied disease comes a young
woman demanding that the medical establishment take notice.
he front rooms of Teresa Barnes’
107-year-old Memphis home easily could
be mistaken for an art gallery were it not
for the bicycle parts strewn about the floor.
Art and bicycling: Barnes ’ 96 and her
dentist husband share these two passions.
The walls are adorned with artwork they
have collected throughout their adult lives,
while at least five bicycles, which they ride
through their Central Gardens neighborhood, are parked here and there. Among
their favorite toys are the folding bicycles
they sometimes carry along when they
travel, which is a considerable number of
days every year.
Despite the elegance of her home, her
lifelong commitment to physical fitness and
the opportunities that professional success
has brought her, Barnes feels like a woman
confined to death row. A little-understood
disease she does not have — at least, not
yet — permeates her family medical history and haunts her. Speaking of her family
history and the fact that pulmonary fibrosis
led to the deaths of at least five of Barnes’
relatives, the UNC medical school’s chief
of pulmonary care, James Donohue, said, “I
have never heard of anything like that.”
Barnes worries not only for herself but
for her twin sister, brother, nine cousins and
nieces, nephews and second cousins too
numerous to count, and she worries for her
newborn daughter, Eme. They all are at
danger of a genetic risk that has ravaged her
family for at least two generations.
In the late 1970s, Teresa Barnes’ father,
Hollis Richardson, was in his early 40s. An
by Paul T. O’Connor
electrician, Richardson had injured his
knee and needed surgery. According to his
medical records, doctors found an unusual
spot on his lung. But nothing seemed to
come of it, and he went back to work. The
spot’s significance would surface 15 years
later, when he became ill.
For six months, doctors treated
Richardson for congestive heart failure —
and then the correct diagnosis was made.
He had pulmonary fibrosis; the symptoms
were a shortness of breath, a hacking dry
cough and clubbed fingers. In early 1995,
Richardson — who had always been a
strong and healthy man — was placed on
Duke Hospital’s waiting list for a lung
transplant, the only approved therapy for
the disease. As Richardson waited, his
health failed. When he finally underwent
surgery in December 1996, he was very ill.
He never regained consciousness and died
two weeks later.
Although pulmonary fibrosis can be a
genetic disorder, doctors told the Richardsons they shouldn’t be concerned. But the
disease surprised them all. Hollis Richardson had four siblings, and pulmonary fibrosis eventually would kill every one of
Teresa Barnes’ voice, still betraying the
disbelief she felt as they occurred, recalls
the drum roll of deaths.
In 2000, Bruce Richardson, a man
whose health was otherwise very good, was
diagnosed with pulmonary fibrosis. He died
on Easter weekend 2001.
At Christmas 2002, Lucy Richardson
Leggett was diagnosed with the disease; she
had no symptoms. In late summer of 2003,
she had knee surgery and within two weeks
was back in the hospital, in intensive care.
Surgery had exacerbated her pulmonary
fibrosis, as it sometimes does to those with-
out symptoms. She died over the Labor
Day weekend. She had progressed from
good health to death in a matter of weeks.