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 In,
"Friendly Genes," Alan
Alda met Scott and Steven Schicedanz, twin brothers diagnosed
with Williams syndrome twenty-three years ago—before
much was known about the condition. Today, scientists know
the syndrome is caused by the deletion of several genes on
chromosome 7 that leads to a suite of physical and developmental
problems. These include vascular diseases, dental and kidney
abnormalities, lower than average I.Q's and poor visual-spatial
skills. However, people with Williams syndrome also tend to
be very verbal and extraordinarily sociable. That, together
with their characteristic elfin faces and starburst-patterned
irises, cause some to speculate that people with Williams
syndrome inspired folktales about elves and other magical
people.
Misunderstood for the first fifteen years of their lives,
the Schicedanz twins today are vocal ambassadors for Williams
Syndrome. They told SCIENTIFIC AMERICAN FRONTIERS all about
what it's like to grow up different.
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Steven:
I'm 39, I live in California and I volunteer my time with
Alzheimer's patients. We feed them breakfast. We do exercises.
We play memory games. We play bingo. We take them out for
walks and back. I worked at the police department for ten
years. I cleaned the jail cells and I worked with the police
officers once in a while. My brother and I did security and
crowd control for a parade.
Scott: I work at the same building, but I work with
people who are more severe with Alzheimer's. I help them around
to the different activities. I'm kind of like an assistant
activities coordinator. I spend about twenty-five hours a
week there.
Q:
When you are not volunteering at your jobs, what else do you
like to do?
Life wasn't easy for me. My brother and I have been
through a lot and because of that we're stronger people.
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Steven:
I'm a Lions member at Lions International. I like to do different
things with them. We help the blind and less fortunate. We
have a good social life. We visit friends and we do different
things. I have been involved in a bowling league with my brother
called the Down Strikers for about three years. I am involved
in karate. I'd like to get into drama and acting in commercials.
Q:
How would you describe yourself to people who aren't familiar
with Williams syndrome?
Scott: First I would say to them, life wasn't easy
for me. My brother and I have been through a lot and because
of that we're stronger people. Different experiences make
you grow wiser and you learn how to accept things as they
come. The bad things only make you stronger and make you look
at life a lot better. You want to have a positive attitude
on life, even though sometimes it can be ugly and dark.
Steven: All I have to say is that to describe myself—or
a person with Williams syndrome—that even when people
shun you, you have to find love in yourself to be able to
be happy and be able to share it with someone else.
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| Extreme
friendliness is the characteristic trait of
people with Williams
syndrome |
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As far as somebody wanting to know about me, I'm open to
anything. As long as people want to learn, I'm willing to
teach. When people realize that we're normal human beings
and we are living a normal life even though we have Williams,
people could look at us and be appreciative of things that
we do. People were amazed because here's a person working
in law enforcement and never once did they think that we were
different. People with Williams syndrome can work anywhere
they want to.
My brother and I are loving and caring people and we want
to tell the world about it. People don't know much about Williams
Syndrome. We need to have people, like my brother and me,
tell other people about it. Because when people know that
you have Williams syndrome, it's a lot easier. More and more,
people are getting to know people with Williams syndrome.
I do try to present myself as normal as I can be. I do that
because I do want people to know me. I want them to know I
have Williams syndrome. Even though we're born different and
we live in a different world, I want to try to present myself
as normal as I can be so that I can actually fit in a normal
world. 
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