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HEALTH

Hidden Danger from

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with health, happiness and prosperity
for all our family and friends.

The Staff of Paragon Underwriters

May the New Year bring to all
our friends and family health, joy,
prosperity and everything good in life.

The Schwartz Family

Roberta, Rosalyn, Howard, Joel & Laurel

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Matthew, Michel, Jordyn & Joshua

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estimated one in 600
Jews of Ashkenazic
background. While
screening for Tay-
Sachs, another Jewish
genetic disease which
cannot be treated
effectively, is common,
there is still no stan-
dard screening mech-
anism for Gaucher.
That is one of the
major reasons for
Gaucher Awareness
Month in September,
says Erin O'Rourke,
who is the spokesper-
son for the National
Gaucher Foundation,
based
in Rockville,
Michael Klar is a normal,
Md.
(www.gaucherdis-
active 10-year-old.
ease.org).
"Many people are
passed along to a child, both par-
reluctant to find out later in life
ents must be carriers. By simple
because of the expense involved
genetic mathematics, there is a 25
for both diagnostic testing and
percent chance that their child
treatment," says Dr. Eisenberg. "It
will contract Gaucher and a 25
would be much better if they
percent chance the child will not
learned the facts earlier in the
have the gene at all. But it is a 50-
game."
50 shot that the child will be a
Insurance coverage varies, but
carrier.
the drug's maker, Genzyme Corp,
If a carrier marries someone
of Cambridge, Mass., will work
with Gaucher, the odds go to 50
with patients on affordable pay-
percent for their children. And
ments. Cerezyme was, however,
should two people with Gaucher
one of the drugs cited by a
have children, the chances of it
Congressional subcommittee
being transmitted are 100 percent.
investigating the cost of prescrip-
My daughter is a carrier and
tion drugs.
before she became pregnant her
But this treatment, developed in
husband was tested. He is free of
the early 1990s, incurred huge
the gene, so their children cannot
research costs and is used for a
get Gaucher.
relatively small pool of people. It
The Klars have two other sons;
replaces the enzyme the Gaucher
Aric, 16 and Jonathan, 14. Neither
patient's blood lacks while allevi-
has Gaucher.
ating the pain and uncertainty
Non is a pharmacist and the
associated with the disease.
Klars made an early decision to
There is reason to believe that a
administer the drug in their own
treatment can be delivered in cap-
home. Nori's brothers gave her a
sule form in a few more years,
quick course in handling an IV
perhaps before this decade is over.
and she has been giving Michael
"It's nothing," says Michael Klar
his injections ever since.
of his Gaucher disease. "I play
"When he was younger, we
roller hockey and nobody ever
made it a special night:' says
told me that there was something
Mark. "We invited his friends over
I couldn't do:'
and made it clear there was noth-
"Our story, thank God, is a good
ing to be afraid of. We didn't hook
one," says Nori."Our son was born
Michael up to an IV stand. He
at a time when a treatment was
could run around with his friends
available.
even when the treatment was
"When he was younger,
going on, just as long as no one
Michael would sometimes ask
gave a hard hit to the bag."
me, `Why do I have to get this
The worldwide list of Gaucher
injection?'
patients is about 50,000 but
"And I'd tell him, 'Because
the disease can be found in an
you're lucky- ❑

—

October 6 2005

