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“Seabiscuit” helps spread word about author’s debilitating disease

070/25/2003

By Maria Kotula / 6NEWS

The author of “Seabiscuit” has beaten incredible odds to become a success story in print and now on the big screen.

Author Laura Hillenbrand has CFIDS, Chronic Fatigue Immune Dysfunction Syndrome.

Much like the horse and jockey she wrote about, Hillenbrand was considered a long shot as an author. But now her book has been turned into a movie and it’s playing in theatres across the country.

The story is a half-blind jockey who rides an undersized, crooked-legged horse in what becomes the legend of the greatest horse race ever run.

It is a metaphor for author Laura Hillenbrand’s own struggles with CFIDS.

In order to write the book, she had to hold a stack of post-it notes above her head and write one sentence at a time, stick them to the bed board and organize them the next time she felt well enough.

Tammi Rhoney has lived with CFIDS for 11 years. For three years, she has been housebound.

A trip to the mailbox is so exhausting that she uses a wheelchair.

“I had to crawl around my house for about ten months because I didn’t have the energy to walk,” Rhoney said. “I even dusted my house crawling.”

Rhoney’s doctor said there is no cure and no known cause.

Doctor Charles Lapp treats his patients’ symptoms: chronic fatigue, memory loss, sleep disorders, vertigo, and muscle and joint paint.

“The pain is as severe as arthritis pain, and almost as severe as cancer pain,” Lapp said.

CFIDS association president Kim Kenney hopes the story behind the making of “Seabiscuit” the movie will help many others.

“The CDC recently did a study and found almost 800,000 people have CFIDS and only 20 percent are diagnosed,” she said.

That makes it more common than breast cancer, multiple sclerosis and AIDS.

The CFIDS Association of America is based in south Charlotte.