South Florida woman has mad cow disease

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http://www.miami.com/mld/miamiherald/7634419.htm

 

Posted on Mon, Jan. 05, 2004

South Florida woman has mad cow disease

BY ASHLEY FANTZ

afantz

 

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As the United States confronts fears of mad cow disease in the beef supply,

Patrick and Alison tend to their daughter, gently wiping the drool from her

mouth and talking to her in familiar soft tones.

 

It's hard to imagine Charlene as she was at age 23 and younger. Those years were

filled with a talkative exuberance, since stolen by variant Creutzfeldt-Jakob,

or the human version of mad cow disease.

 

Diagnosed just months after graduating from the University of Miami in 2001,

Charlene is a rare case of a human in the United States with the brain-wasting

disorder.

 

On Sunday, Charlene lay motionless on the living room couch dressed in a Disney

T-shirt and sweat pants. Her head turned to the side, she stared blankly. At

times, she moaned.

 

Charlene's weight, her mother said, was up 10 pounds from the 40 her small frame

has lost. Her black hair remains shiny, much like in a college graduation photo

across the room.

 

Patrick cannot bear to spend much time in his daughter's bedroom, a blue and

pink enclave of stuffed animals, a feeding tube apparatus, and several dusty

bottles of nail polish on her dresser.

 

''Life could not get any worse than this,'' Patrick said. ``You can do anything

to me now. Nothing matters after this. It's been horrible.''

 

Patrick and Alison are originally from England, where they suspect Charlene ate

contaminated beef sometime before 1992. She is one of 129 cases reported in the

United Kingdom from October 1996 to November 2002, according to the World Health

Organization.

 

During the weekend, the U.S. government announced that it would give DNA tests

to an infected Washington state cow to determine if it originated from Canada.

If so, the United States could seek a clearance stamp from the WHO. That would

classify the nation free of mad cow since the disease was found in imported

cattle and authorities acted to eradicate it.

 

Beef industry advocates champion the move as a way to save the millions of

dollars it has lost in the past few weeks because foreign nations have banned

U.S. beef.

 

OUTRAGED

 

Consumer advocates, and Charlene's parents, consider it an outrage.

 

''We should be testing every cow. If one person gets it here, that's one too

many,'' said Patrick, who asked that The Herald not print the family's last

name. ``I'm not surprised [about mad cow in the U.S.] and I wonder how long it's

actually been here.''

 

The form of mad cow that Charlene has can lie dormant between five and 40 years,

doctors have said. According to the WHO, the strain generally afflicts those in

their 20s, though it's unclear why.

 

In late 2001, Charlene was looking for the ''perfect job,'' her father said, and

considering getting a master's or law degree. She worked throughout college and

high school in The Herald's circulation department juggling a variety of

demanding tasks, including organizing several charity events sponsored by the

newspaper.

 

But she began to lose focus. Her right hand shook, and her leg buckled

sometimes, causing her to stumble. At one point, she ran a red light and crashed

her car.

 

Charlene's mood swings were severe, prompting Florida doctors to misdiagnose her

as depressed, a common mistake because variant Creutzfeldt-Jakob manifests

psychiatric symptoms first.

 

DIAGNOSED IN ENGLAND

 

Alison then took her daughter to see English neurologists.

 

''When the doctor told me what she had, I didn't want to hear it, I couldn't

hear it,'' said Alison, who has since quit her job in England and moved to

Miramar to care round-the-clock for Charlene. ``The doctor was giving me

leaflets about the disease and I refused to take them. It was unreal. I put

Charlene in the car and just cried.''

 

Patrick and Alison have consulted attorneys to see whether it's possible to sue

the English government for the way it initially reacted to mad cow.

 

According to a Jan. 2 New York Times article, the English government released a

memo on mad cow in 1986, cautioning that it could have ''severe repercussions to

the export trade and possibly also for humans,'' and that any report of the

pathogen remain ``confidential.''

 

A decade later, the article states, Agriculture Minister Douglas Hogg said that

``British beef is wholly safe.''

 

''We heard him,'' Alison said. ''We believed him at the time and now look -- 12

years later,'' she points to her daughter. ``If the government would have at

least acknowledged that there was a serious problem with contamination, I could

understand it.''

 

Neither Patrick, Alison, or their other two children, David, 28, and Lisa, 23,

eat beef.

 

DEVASTATED

 

Both siblings have been devastated by their sister's illness.

 

''Lisa and Char were like twins,'' Alison said. ``They did everything

together.''

 

Charlene's friends from college don't stop by anymore. They prefer, her parents

said, to remember her as the sharp-witted admirer of reggae music and American

history.

 

''We just want people to be really careful. Consider what they are eating and

how safe it is,'' Patrick said. ``We know there are few people who get this

disease, but the worst thing is to see even one more family go through this.''

 

 

 

 

 

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