Living with the pain

Katie Foster is only 32 but feels like she's going on 50. In the past 14 months, her energy level has been cut in half, according to her husband, Jeff.

The cause is Behcet's (pronounced BAY-sets) disease, a rare malady that hit Katie hard in late 2005.

"There's no way these Christmas decorations would still be up if this was two years ago," Katie said the week after New Year's.
Behcet's is an autoimmune disease and a chronic condition that causes sores or ulcers in the mouth and genitals and inflammation in parts of the eye. In some people, it also causes inflammation of the digestive tract, brain and spinal cord.

Since she was 9, Foster, of Germantown, Ill., has gotten sores in her mouth, but she never knew they were symptoms of Behcet's disease. Whenever she'd go to the doctor, they'd dismiss it, telling her she had a herpes virus or that her mouth ulcers were from stress.

"So, I just started to think that's what it was," she said.

But in September 2005, her health started getting much worse. "The ulcers started cropping up everywhere," she said. "There were so many. It was unbelievable. I was unable to eat, hydrate or take medicines."

On Thanksgiving 2005, Katie started feeling weak and soon had no feeling on her left side. Her family took her to the emergency room and waited on test results to find out what had happened. Katie was fortunate the emergency room doctor was from the Middle East, where the disease is more prevalent.

Slowly, she regained feeling, with the exception of her hand and the peripheral vision in her eye. When she went to a specialist the next day, she received a diagnosis.

"It was a big relief when they finally diagnosed it," Katie said. "It was like, 'OK, I'm not crazy. There really is something wrong with me,' but now, there's nothing they can do about it."

Behcet's disease has no cure. "It's more of just pain control and numbing your sores," Jeff Foster said.

Katie's case is severe, and her doctors have not yet found a medication or combination of medications that works for her.

"There's never a time when I have zero (ulcers)," she said. "It's constant. They take seven to 10 days to go away, but they rotate. I get rid of a batch and a new batch comes."

The disease can go into remission, which means being symptom-free for six months, but it hasn't happened yet for her.

Living with Behcet's and being in constant pain causes Katie to be fatigued. She said it's hard for her to keep up with her two daughters, Allison, 9 and Averi, 6.

"My 9 year-old is severely depressed. She gets scared when I lay down to take a nap. She knows more than she should, and she shouldn't have to," Katie said tearfully.

The cause of Behcet's is unknown, but research indicates it may be genetic. It's common in Japan, Turkey and Israel but rare in the United States.

"My main goal is to get the name (Behcet's) out there," Katie said. "People don't know how to spell it, people don't know how to pronounce it."

To raise awareness and help with medical costs, friends and family held a benefit for Katie, who does not have health insurance because she is unable to work full time and her husband is self-employed.

Meanwhile, she's grateful for her family and friends.

"When I'm sick, they're here, even though it's a 30-minute drive," she said. "My neighbors have been amazing."

SIDEBAR

Behcet's disease

By Rishika Murthy

Copley News Service

WHAT: A rare, chronic inflammatory disorder with an unknown cause. Pronounced "BAY-sets," it generally begins in people in their 20s or 30s, though it can happen at any age. It tends to occur more often in men.

SYMPTOMS: Recurrent ulcers in the mouth (resembling canker sores) and on the genitals, and eye inflammation. The disorder also may cause various types of skin lesions, arthritis, bowel inflammation, meningitis and cranial nerve palsies. It may involve all organs and affect the central nervous system, causing memory loss, and impaired speech, balance and movement.

EFFECTS: May include blindness, stroke, swelling of the spinal cord and intestinal problems.

TREATMENT: Symptomatic and supportive. Medication may be prescribed to reduce inflammation or regulate the immune system. Immunosuppressive therapy may be considered.

PROGNOSIS: It's a lifelong disorder that comes and goes. Permanent remission has not been reported.

Source: Web site of the National Institute of Neurological Disorders and Stroke