New treatment for rare disorder gives local woman hope

[Leo]

By Jenna Johnson / Daily Nebraskan
October 28, 2004

She wanted to burn the couch before she went to New Jersey for treatment.

That way, when she returned home she wouldn't be constantly reminded of the past year she had spent living on it.

And if she never came home, Heather Kuhl didn't want the overstuffed, patterned couch to remind her husband and son of the seven years she spent fighting Reflex Sympathetic Dystrophy Syndrome - a painful, hard-to-diagnose disease that usually results from a nerve or soft tissue injury that didn't heal correctly.

"The pain is so bad," Kuhl said. "It's worse than having a baby. It's worse than having cancer. It affects all of your organs."

When Kuhl, a former University of Nebraska-Lincoln employee, was at her worst earlier this year, the lightest touch would send her screaming.

She often was confined to the couch. Rushed to the emergency room twice a month with various complications, she found no relief. Kuhl said few of the medical professionals she turned to understood RSDS, but they treated her burning pain. She was given "enough medications to kill a normal person."

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