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Cystic Fibrosis from page 63
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64
December 10 • 2009
006
People with CF now live to an
younger brother, David, whose symp-
average age of 37. More than 500
toms were more severe. As a child,
Americans with CF are 50 and older.
David was hospitalized regularly for a
As for a cure, "Gene therapy is the
prolonged "clean out" of the build-up
Holy Grail," explains Simon, who lives
in his lungs.
in Ann Arbor. "The actual gene would
But in high school, his lung func-
be replaced."
tion deteriorated. He couldn't walk
"People with cystic fibrosis spend
across the room without tiring. He had
2-4 hours a day just taking care of
oxygen tanks at each end of the house,
themselves:' says Gayle Greenberg, who
Levine says. And he took portable
was in town recently
tanks to school.
from the Cystic Fibrosis
Heart/lung trans-
Foundation (CFF) head-
plants allowed David to
quarters in Bethesda, Md.
graduate high school
"The more exercise
and attend college. But
they get, the better off
when his body rejected
they are," Greenberg
the transplants, he died
says. "Whether it's play-
at age 21.
ing a wind instrument
Dr. Simon has CF
or swimming, anything
patients call Levine for
that helps expand the
reassurance that they
lungs is beneficial. It's a
can live into adulthood.
very complicated dis-
But they rarely meet.
"Mark is not that unusu-
ease."
"We try to avoid
al," says Dr. Richard
In addition, CF
contact between people
Simon. "People are living
patients are always on
with CF because it was
longer and healthier."
antibiotics, not just in
found that CF patients
flu season, she says.
could easily share differ-
"Because once they get a bug, it's
ent strains of bacteria with each other,"
harder for them to get rid of it."
Levine says. "If CF patients do hang out
Greenberg, who is CFF senior direc- together, then there are 'rules' to obey,
tor of major gifts, speaks from experi-
like we shouldn't sit next to or directly
ence. She has raised a son with cystic
across from each other."
fibrosis, who at age 36 is recovering
Still, Levine is often the face of CF
from a lung transplant.
at local Cystic Fibrosis Foundation
"For the first 20 years of Mitchell's
fundraisers.
life, there was really no hope she says.
His advice to parents who have a
In the past, few of CF's victims
child with cystic fibrosis is "be open
lived to adulthood. But new drugs,
and help fund a cure.
virtually all of them the result of the
"My parents never kept it a secret:'
foundation's partnerships with phar-
he says. "We were always doing fund-
maceutical companies, now relieve
raisers. Try to train your kids to be
symptoms, allowing more sufferers to
med-compliant [take their medicines]
live a more normal, longer life until a
and to be independent. It's tough for
cure is found.
parents to let go!'
Levine and his wife Joelle, a licensed
New Treatment
professional counselor whom he
Mark Levine, 39, has just taken part
met on J-Date, and their children,
in a clinical trial for a drug that up to
Brooke, 14, and Adam, 12, belong to
now has been only administered intra- Congregation Shir Shalom in West
venously. (He has scars on his arms
Bloomfield. ❑
from all the needles he's endured.)
The trial tests an inhaled version
For more information, contact Pam Ogg,
which, along with being easier to take,
executive director of the Metropolitan
is being evaluated for its speed and
Detroit-Northwest Ohio Chapter of the
effectiveness.
Cystic Fibrosis Foundation, (248) 269-
These drugs weren't available for his 8759, or go to www.cff.org.