By Joy McMasters
Daily Bruin Staff
The blood test for the Tay-Sachs gene may take 15 minutes and
will be administered for free in Ackerman Union this week, but
planners worry few will show up for the exam.
The Tay-Sachs gene, which prevents development beyond infancy,
is found in one out of every 30 people in the Eastern-European
Jewish, French-Canadian, and Cajun populations but anyone could
potentially be a carrier.
“Maybe people think, “˜It won’t affect
me,'” said second-year international development
studies student Tamar Solomin.
“We’ve tried to get the word out,” Solomin
said. “I don’t know if people are afraid of blood tests
or if they haven’t heard of it or if they think it’s a
Jewish disease.”
The recessive Tay-Sachs gene can remain hidden for generations,
but if two people who carry the gene have a child, there is a one
in four probability that the child will have the disease and a 50
percent chance of being a carrier.
“If it does happen to you, you don’t care about the
odds,” said Linguistics Professor Pam Munro whose son Alex,
born in 1985, had the disease.
Though he lived almost eight years, much longer than most
Tay-Sachs patients, Alex only reached the developmental level of a
two-month-old infant, Munro said.
Alex was paralyzed, suffered seizures and frequent infections,
and ate through a feeding tube because he could no longer
swallow.
“The most retarded person you’ve ever seen is far
more capable than Alex was,” Munro said.
About 10 years ago, Munro began urging all of her students to be
tested for the gene, and one year, three exchange students from
Asia told her they had decided to be tested.
She said she thought it was nice they wanted to do so, but that
she didn’t see much reason for it since they were from fairly
homogenous regions in Asia.
Later one of the young women came back and told her she learned
she was a carrier.
“It isn’t just something that affects white
people,” Munro said.
“If I can prevent another person from having to go through
what I’ve gone through with Alex, that’ll be worth more
than all the linguistics I’ve taught,” Munro added.
Munro and her husband did not know they carried the gene until
after Alex was diagnosed with Tay-Sachs disease.
“You can’t imagine how difficult it is and how
horrible to see your child get sicker and sicker ““ to love
him with all your might but wish he hadn’t been born,”
Munro said.
“That’s not the way anybody wants to find out
they’re a carrier,” Munro said.
An almost painless way to find out involves filling out a short
form and having about a teaspoon of blood drawn for a blood test,
Solomin said.
The testing will be done in Ackerman Union today, Wednesday, and
Thursday, but due to scheduling problems it will be in a number of
different rooms.
Solomin is concerned that fewer people will make it to the
testing site this year because last year all the testing was done
in one room and only about 100 people were tested.
According to Munro, being tested for the Tay-Sachs gene could be
the most important thing to happen in a person’s life.
Anyone who is 18 years old or older and is not pregnant may be
tested for free this week to find out if they will need to take
precautions to prevent having a child with the disease.
“We do this at no charge, but we’re subsidized by
the state of California,” said Shirley Eskoff of the
Tay-Sachs Disease Prevention Program.
“Both parents must be carriers of this gene to produce a
child with Tay-Sachs,” Eskoff said.
With this in mind, Munro suggests that carriers either
don’t marry each other, or decide to adopt rather than having
children of their own.
Munro said every few months the fields of medicine and genetics
uncover new ways of dealing with genetic disease like
Tay-Sachs.
“There’s lots and lots of hope for carrier
couples,” Munro added.