X
job. "We did our best to give her the
experiences Of a normal childhood,"
Sandy says. "The disease usually does
not affect the child's cognitive abili-
ties so that Rachel was able to attend
school when times were good. She
had many friends and managed to
keep up with her age group.
- "It was our powerlessness, our
inability to do anything for this child
that was most difficult to accept.
Without the support of our family
and friends, we never would have
been able to handle this by our-
selves," Sandy says.
Chicago has one of 15 chapters of
the Dysautonomia Foundation, which
is headquartered in New York. Dr.
Alicia Axelrod, director of the
Dysautonomia Treatment and
Evaluation Center in New York, is the
world expert on the disease. Founded in
1970, the center was established to cen-
tralize care and conduct clinical research
so that significant statistics could be
obtained regarding effectiveness of vari-
ous treatments. In addition, the center
serves as a resource for parents and
physicians.
In 1985, a second site funded by
Hadassah was established in Israel.
Today, every child in the world diag-
nosed with dysautonomia becomes
part of Dr. Axelrod's database.
"We need to continue funding the
research until they find the gene and
figure out how to treat FD," says Dr.
Axelrod. "We also need to continually
alert the medical community about
this population because there is no
cure for dysautonomia and the terri-
ble side effects can be avoided and
reduced once the diagnosis is made."
Huge strides have been made.
Several adults with FD are now living
into their 50s and, with genetic test-
ing, 59 healthy babies have been born
to at-risk parents.
Val Baker, former president of the
Detroit Area Dysautonomia Chapter,
wants to reactivate the local group.
"All we need are a few people who
have the interest and will volunteer
their time to put on an event to raise
money for continued research," says
Baker. "That's what this chapter does.
We support our friend. and families by
providing funds for research. I'd love to
get this project going again." ❑
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1/21
2000
105