Date: Fri 02-Oct-1998

Publication: Bee

Author: CURT

Quick Words:

Norton-Marfan-Syndrome

Full Text:

"Dateline" Segment Focuses On Newtown Family

(with cut)

Why would a popular television news show come to Newtown to film a segment on

a little known medical disorder called Marfan Syndrome?

The story is important precisely because the connective tissue disorder is so

little known, and Newtown was the place to come because the Norton family on

Old Bethel Road knows more about the disease than most people.

"There are thousands of people out there who are dying of Marfan Syndrome and

who have been misdiagnosed," said Ruth Norton this week. Mrs Norton has been

diagnosed with the disorder, and so has her son, Lee, 18.

Ruth Norton learned about Marfan Syndrome the hard way. She lost a 15-year-old

son, Robert, to the disease in 1992. The hereditary disease has also claimed

the lives of her father, a sister, and a brother. The trauma it has brought to

her family led her to learn all she could about Marfan Syndrome, and she found

many answers to her questions at New York Cornell Hospital, where a team of

researchers is studying the disorder.

She became a lay expert on the syndrome, and on April 15, 1997 she was invited

to testify before the US Senate on Marfan Syndrome. She explained that if more

people were aware of Marfan Syndrome characteristics -- tall, thin stature

with disproportionately long limbs, fingers, and toes -- and persistent

symptoms of cough, shortness of breath, weakness, and pallor, many lives could

be saved through early detection and treatment.

In raising the consciousness of legislators, she also raised her own profile

in the cause, and she came to the attention of NBC producer Ellen Burns, who

wanted to put together a Dateline segment on the disorder. Ms Burns, along

with NBC medical correspondent Dr Bob Arnot, recently came to the Norton home

on Old Bethel Road for two days of filming.

The Dateline segment could air as early as Sunday, according to Mrs Norton,

but could be delayed to Monday or Tuesday or later in the week depending on

whether other news pre-empts the segment.