To Life!

HEAL - H & FITNESS

Kicking Deadly
Cystic Fibrosis

Beth Ahm hosts fundraisers to fight
genetic disease common among Jews.

tancy was age 5. This year, the average life
expectancy is 37 years old. For newborns
diagnosed today, the hope is they will have
a normal life expectancy. But, they have to
work very hard to stay healthy'

Treatment Advances
The average CF patient undergoes two
hours of breathing treatments each morn-
ing and night, followed by procedures to
clear their airways. They also have to take
enzymes before meals to help digest food.
When infections arise, they're treated with
Alexa Nieman, 8, of Hartland, living with CF
antibiotic therapies. In cases of severe lung
disease, a lung transplant may be needed.
Alexa is receiving a new type of treat-
ing.
I'm
a
carrier,
but
my
brother
is
not.
Robin Schwartz
ment
called nebulised hypertonic saline.
My
children
are
all
carriers
and
they
are
Special to the Jewish News
A salt-water solution is inhaled as a fine
aware and will make sure their children
mist through a mask or mouthpiece. It
are aware:"
hen Evelyn and Ben Gorge of
helps
clear the thick mucus in her lungs
West Bloomfield welcomed
and hydrate her airways.
Living With CF
their first son, Michael, into
"She's a child who has CF, but I don't
Alexa Nieman of Hartland is a beautiful
the world 49 years ago, they had no idea
want
to make her life all about CF," said
girl
with
loose,
sandy
blond
curls
and
an
they had beaten the genetic odds.
Dawn. "I want her to live the most normal
angelic face. The 8-year-old is a competi-
Neither of them knew they were car-
life that she can."
tive cheerleader and a child who's living
rying the gene for cystic fibrosis (CF), an
Starting this fall, all newborns in
with CF. She was diagnosed with the dis-
inherited chronic disease that affects the
Michigan will be screened for cystic fibro-
lungs and digestive system. While Michael ease when she was just 2 weeks old.
sis. Michigan is the 36th
"She takes enzymes at
was healthy, their two younger children,
state to support routine CF
every meal;' said Alexa's
Marshall and Karen, were both born with
screening at birth. Studies
mother, Dawn Nieman. "She
CF; Marshall died at 19, Karen only lived
show newborn screening
does
breathing
treatments
to age 12.
can improve and extend
daily. We follow the regimen,
"They took them to the best treatment
the lives of babies born
but she's relatively healthy
centers; they did everything they possibly
with the disease.
in comparison to some. I'm
could," said the children's aunt, Marilyn
"It's best if you catch it
hoping there will be a cure;
Rice of West Bloomfield, president of
before symptoms start','
that's what we're fighting for Honorees Eve lyn and Ben
Congregation Beth Ahm. "They gave them
Gorge of Wes t Bloomfield
Dr. Nasr said. "Then, you're
wonderful lives. Even though they were ter- every single day."
way ahead of the game."
There's good reason to
minally ill, they still had wonderful lives."
be optimistic. While a cure for CF has
Cystic fibrosis affects about 30,000
Fighting Back
not yet been found, with improved treat-
children and young adults in the United
States. While the disease can occur among ments, patients like Alexa are living longer, While finding a cure is the ultimate goal,
so is eradicating cystic fibrosis. One way
healthier lives.
any ethnic group, one in 29 Ashkenazi
to prevent the disease is for people to
"The approach to treating CF has
Jews is a carrier. That makes cystic fibro-
undergo genetic screening so they know
changed dramatically in the last 10 years.
sis almost as common among Eastern
whether they are carriers. According to the
We've been much more aggressive said
European Jews as Tay-Sachs disease.
Cystic Fibrosis Foundation, more than 10
"We never knew what cystic fibrosis was Dr. Samya Nasr, director of the Cystic
million Americans are symptomless carri-
Fibrosis Center at University of Michigan
or that we had it in our family:' Rice said.
ers of the CF gene.
Health System in Ann Arbor. "When you
"It hits randomly and different genera-
To get the disease, a child must inherit
look at CF in the 1950s, average life expec-
tions need to be aware and use the test-

W

one copy of the defective gene from each
parent. A simple blood test can determine
whether a person is a CF carrier, but the
testing can be expensive and it's generally
not covered by health insurance. Evelyn
and Ben Gorge started an endowment at
University Hospital in Ann Arbor to make
genetic testing available for the extended
families of CF patients.
"The program the Gorges are support-
ing is very unique said Nasr. "We usually
only test siblings; now we're also able to
test other family members."
Because of their support and dedica-
tion, the Gorges will be honored Tuesday,
June 26, at Beth Ahm in partnership with
the Troy-based Cystic Fibrosis Foundation
during a strolling dinner reception. The
couple's son, Michael, and Nasr are two
of the evening's featured speakers. Alexa
Nieman and her family will also be there.
The event will help raise money for the
local cystic fibrosis chapter.
"They're coming so far," said Rice. "We
need to continue to raise money and lend
our support. Doctors are keeping these
young people alive into their 30s now.
There's real hope for the future. They're
doing beautiful work." E

Help Kick CF

• A walk called "Catch the Spirit
- Kick CF" led by Fox2's Sherry
Margolis will be held Sunday, June
24. Registration begins at 9:30 a.m.
at Beth Ahm, 5075 W. Maple, West
Bloomfield. $36 fee includes T-shirt,
water, juice and bagels at the end.
• A strolling dinner honoring the
Gorges will be held at Beth Ahm at
6 p.m. Tuesday, June 26. Tickets are
$150 per person. Call Beth Ahm to
RSVP, (248) 851-6880
• For information about CF, or to
contact the local chapter: call (248)
269-8759, or go to the Web site:
www.cff.org/Chapters/detroit.

June 21 . 2007

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