Living with Behcet's

Photo by Alan Warren, Messenger-Inquirer | awarren@messenger-inquirer.com Katherine Daugherty, the former director of pharmacy at Ohio County Hospital, looks over the poppy flowers in her backyard garden on Tuesday at her home in Owensboro. Daugherty suffers from Behcet's syndrome, a rare disorder that causes blood vessel inflammation throughout the body.

Katherine Daugherty used her palm to smack a post on her gazebo, which cantilevers over a large goldfish pond in her backyard.

Her fish know that sound means food is coming. They swam near the surface while Daugherty pulled down a bag of pellets from a beam above her head. She reached in and grabbed handfuls of fish food to cast over the pond's surface.

It was a good day for Daugherty, whose body can't take heat. Most summer days she sequesters herself in the house by 10 a.m., but Tuesday was breezy and 75 degrees at noon.

Daugherty, the former director of pharmacy at Ohio County Hospital, sat in the gazebo with a ceiling fan providing extra comfort. She looked out over her backyard, which is her stress reliever, her haven.

A robin bathed on stones in the pond. Every inch of her yard is covered by a mix of brilliant hues -- daylilies, poppies and Queen Anne's Lace, to name a few. Her backyard once was featured in a gardening magazine, and it has been featured on the local pond tour.

"This was always my dream," she said of her blooming backyard. "It was my dream that I never thought I would see."

Her picture-perfect perch helps her cope with Behcet's syndrome, a rare disorder that causes blood vessel inflammation throughout the body. She only knows of five other people in Owensboro and the surrounding area who suffer from Behcet's.

She was diagnosed at age 46.

Looking back, she now recognizes its telltale signs.

At age 6, she remembers vascular headaches with high fevers and vomiting. By the age of 12, her arthritis kicked in.

Later in life, Daugherty suffered from premature ovarian failure, carpal tunnel syndrome and fibromyalgia. After a doctor prescribed an immunosuppressant medication, Behcet's set in.

Behcet's syndrome, which often starts between 30 to 40 years of age, is a multisystem inflammatory disorder. It has no cure. Instead, doctors treat its symptoms, which include severe mouth ulcers; genital lesions; posterior uveitis, or inflammation in the back of the eye; pus-filled growths on the skin; joint swelling and more.

The disorder is often referred to as the Silk Road syndrome because it is more common in the Middle East and Asia, along ancient trading routes known as the Silk Road. In fact, it is a leading cause of blindness in Japan.

Daugherty is one-quarter Lebanese. She wonders if that's where it came from.

For years, doctors called Behcet's "the nuisance disease," Daugherty said.

"'It's just mouth ulcers,' " she said, mimicking what doctors told her in the past. "No. It's the mouth-ulcers-till-you-can't-eat disease. I lived three months once on milkshakes."

Daugherty said she was diagnosed with ulcerative colitis, Crohn's disease and a number of other illnesses before a doctor finally discovered Behcet's.

"It's hard to get a definitive diagnosis because the symptoms are so intertwined with so many other diseases," she said. "This is a disease of exclusion. They rule everything else out. They don't have Behcet's on the radar."

Last week, she had an acute attack, which was brought on by an emotional trigger. Among her symptoms: At least 100 lesions covered her scalp.

"Data shows you don't have as many bad attacks as you age," Daugherty said.

Her husband, Andy Daugherty, was a pharmacist also. Their medical background has helped them educate themselves about Behcet's.

Eight years ago, she traveled to a world conference on Behcet's in Las Vegas, where she met 350 people who had been diagnosed with the disorder. And she's read several books on the disorder.

Daugherty fears other people have Behcet's, but doctors have diagnosed them incorrectly.

"Behcet's continues to be a mysterious disease because it doesn't follow a pattern," Daugherty said. "It doesn't always start with mouth ulcers. Everyone (with Behcet's) has a different story."

Renee Beasley Jones, 270-228-2835, rbeasleyjones@messenger-inquirer.com.

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