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Rare disorder's diagnosis draws media attention

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VENTURA — A Ventura teen’s struggle to obtain a diagnosis for a relatively rare auto-immune disorder will  be featured on the Discovery Health Channel.

Angie Abbas, 18, who has Antiphospholipid Antibody Syndrome (APS), will be featured in a segment of “Mystery Diagnosis” in early 2006. The date has not been  determined.

In Mason City-Clear Lake, the Discovery Health Channel is Channel 203 on Mediacom’s digital-plus package or Channel 93 through CL Tel.

“Mystery Diagnosis” is a series that tells the stories of how people have obtained difficult diagnoses. It is produced through True Entertainment LLC of New York City.

“We thought it was just going to be a simple little thing,” Angie’s mother, Michelle LaRue, said of the program. “We didn’t know it was going to be a re-enactment, three days of filming and lots of phone interviews.”

Angie’s diagnosis was difficult because APS mimics other disorders, LaRue said. In addition, Angie’s primary symptom, a severe twitching of the head and neck, is not typical.

Although physicians were cautious about making a premature diagnosis, Angie and her mother persevered in their belief that Angie suffered from APS, also called “sticky blood,” and needed to be treated for it.

Mason City oncologist Dr. Walter Bate, who made the diagnosis in November 2004, said he was finally persuaded by evidence discovered by Angie’s mother. In her research of the medical literature, she learned there have been cases in which twitching was a symptom of APS.

“(Her mother) was a very strong advocate at pushing this at me,” Bate said. “She almost force-fed me with it. But I liked the way she did it.”

Angie’s condition was made worse by that fact that she also has a genetic mutation, prothrombin 20210, that also puts her at risk for blood clots, Bate said. The combination of the APS, which is an acquired syndrome, and the genetic mutation is “extremely rare,” he said.

Her symptoms surfaced in May 2004, when doctors found an irregularity in the blood work of then-16-year-old Angie, who was pregnant.

On May 16, Angie began exhibiting severe twitching, a movement disorder called muscular chorea. The condition manifested itself over a period of several months, her mother said. Angie was also experiencing migraine headaches that nothing seemed to help.

Convinced that her daughter had a serious problem, LaRue began conducting her own research of medical literature largely over the Internet.  She believed Angie had APS and set out to convince the doctors.

They were cautious about making the diagnosis since Angie did not meet all the criteria for APS. She had not yet experienced what physicians termed an “event” — a blood clot, stroke, miscarriage or stillbirth.

LaRue did not want to wait for an event to occur. She began administering a baby aspirin a day to her daughter as a precaution.

She also decided to videotape Angie when she was twitching. She believes it was that tape that may have interested the producers of “Mystery Diagnosis.”

Angie’s son, Cameron, was born eight weeks prematurely on July 25, 2004. Mason City obstetrician Dr. Michael Faust performed a C-section because Angie had developed severe toxemia. “The APS increased her risk of toxemia,” he said.

In the meantime, producers of “Mystery Diagnosis” had learned about Angie through the APS Foundation of America, a relatively new organization in which Angie and her mother had become active.

Mother and daughter were contacted by the show’s producers in August 2005. The producers thought Angie’s story fit within the parameters of the program’s concept.

“I was really excited about it,” said Angie, a senior at Clear Lake High School. “A fit person has no conception of how it feels to have a long-term disability or illness. It is a very difficult thing for them to understand that though you may look well and even mostly act well, you may feel very ill.”

Filming by a crew from Los Angeles and New York began on Oct. 19 and involved personal interviews at a Minneapolis production studio with Angie and her mother, Dr. Faust and Dr. Bate, Angie’s uncle, Ron Grell of Clear Lake, and family friend Katie Lightbody of Clear Lake.

“It was a very long day and it was very, very emotional,” LaRue said.

The film crew came to North Iowa the following day to film re-enactments of the delivery of Angie’s baby, examinations by the doctors and the diagnosis at Mercy Medical Center-North Iowa.

“They focused on the struggles leading to the diagnosis, how frustrating it was and how important my research was,” LaRue said.

Filming continued Oct. 21 at Angie’s home in rural Ventura.

Bate, who was filmed re-enacting his examinations of Angie, said he decided to participate in the television program because Angie really wanted him to do it. “I thought it would be good for Angela and I thought it was some useful information for other patients who have similar symptoms,” he said.

Angie’s symptoms have improved under treatment, Bate said, although her mother said she still experiences flares — the twitching, severe headaches and joint pain.

“They don’t know what to do other than to give her pain pills, keep her comfortable and wait for it to subside  — and watch for stroke symptoms,” LaRue said.

Angie said she hopes her participation in the Discovery Health Channel program will help educate others who may have APS and not know it.

“If I can help just one person, it’s worth it.”

Reach Kristin Buehner at 421-0533 or


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