Vickroy: Bizarre symptoms, unclear diagnosis? Must be autoimmune disorder
By Donna Vickroy firstname.lastname@example.org Twitter: @dvickroy September 13, 2013 7:12PM
Shea Carey and his fiancee, Paula Kochan, struggle to find relief for Carey's newly diagnosed autoimmune disease. | Donna Vickroy~Sun-Times Media
Updated: October 16, 2013 6:37AM
There are thousands of miles between the South Side of Chicago and the Silk Road made famous by Marco Polo.
The famous explorer’s travels opened doors onto worlds of wonder, but they also resulted in the spread of a baffling illness — one that has left Worth resident Shea Carey perplexed on good days, emotional and suffering on bad ones.
It wasn’t so long ago that the 2006 Mount Carmel High School graduate was pursuing his lifelong dream of being a professional hockey player. The middle child of a courier company owner and a Chicago police officer, Carey had been chosen to play hockey for a Canadian league.
For the kid who had skated since he was 4, it was the opportunity of a lifetime.
“I love hockey. I breathe hockey. I love being around hockey,” Carey, 25, said.
But it wasn’t long before the dream of one day playing in the National Hockey League, possibly with the Blackhawks, would begin to fade. Just a month into the 2007 season, Carey began developing ulcers, sores throughout his mouth and even down his throat. He was diagnosed with tonsillitis and had the tonsils out.
But the ulcers came back, and with them anxiety that got so bad he was forced to quit hockey and lose a hockey scholarship to the Milwaukee School of Engineering.
“At the time, I didn’t know what was happening,” Carey said.
Over the next few years, the bizarre symptoms cleared up and then returned, again and again, sometimes accompanied by joint pain so severe that he could hardly get out of bed.
In between bouts, Carey resumed playing hockey and prayed the ulcers would not return. But they always did.
Now, a once-strapping 200-pound athlete has lost a fourth of his body weight and needs the assistance of his fiancee, Paula Kochan, to walk up the stairs, shower and use the washroom. Each morning, it takes Carey several hours to loosen up his muscles to be able to move continuously.
Carey was eventually diagnosed with a mysterious autoimmune disorder called Behcet’s syndrome, which is extremely rare in the United States but quite common in the Middle East and Asia, particularly along the celebrated Silk Road.
“When Marco Polo went on his quest, he either took (Behcet’s) or brought it back with him,” said Dr. Mirta Santos, director of the American Behcet’s Disease Association.
She said there are only about 18,000 Behcet’s patients in the U.S. But it is on behalf of that small group that the association works to get the word out in hopes of increasing awareness and generating much-needed medical research.
Dr. Nadera Sweiss, associate professor of medicine at University of Illinois Hospital in Chicago, said Behcet’s typically begins to show up in patients in their 20s, and the symptoms can be quite severe.
“Patients can have severe ulcers in the mouth and genital area. They can even lose their tongues,” she said.
Ulcers can develop in the intestinal tract and even on the brain. In addition, there is joint pain, fatigue and, in many cases, blindness.
“The nightmare is the treatment,” Sweiss said. “We do not have FDA-approved treatments or therapies. And that will be extremely hard to get because we do not have many cases to study. There is not a lot of research here in the United States. So for now, symptoms are treated individually.”
When Sweiss practiced in the Middle East, she saw patients with Behcet’s all the time.
An expert on autoimmune disorders, Sweiss is also director of the Bernie Mac Sarcoidosis Translational Advanced Research Center at the hospital, where a town hall meeting on autoimmune diseases will be held from 10 a.m. to noon Oct. 3.
The National Institutes of Health estimates there are 23.5 million people in this country who suffer from autoimmune disease, compared with 9 million with cancer. But because many diseases fall under the autoimmune umbrella — some estimate about 100, including lupus, multiple sclerosis, sarcoidosis and rheumatoid arthritis — and because many of the syndromes are difficult to diagnose, the category does not get nearly the attention or research that cancer does, Sweiss said.
“When I was in medical school in the Middle East, a professor told us that every disease on Earth is related to either infection or autoimmune disorder,” she said.
It remains uncertain exactly what causes an autoimmune disease, but there are several accepted theories. It is believed that patients have a genetic predisposition that’s triggered by either an infection or something environmental, including stress, said Dr. Mihaela Mihailescu, a rheumatologist at Christ Medical Center in Oak Lawn.
While autoimmune disease is characterized by the body’s inclination to attack its own tissues, not all do so in the same way, Mihailescu said. Some target muscles, others joints and some, such as Behcet’s, manifest with ulcers and body aches. Similarly, different diseases target different demographics, some attacking primarily women, others honing in on a particular geographic area.
Carey said he is not of Middle Eastern or Asian descent and has never been in either of those areas of the world. He is as confused as he is frustrated.
“This doesn’t make any sense,” he said.
Like many patients diagnosed with autoimmune disease, he went from doctor to doctor seeking an explanation.
Sweiss said it often takes anywhere from two to 10 years to properly diagnose an autoimmune disorder, particularly a rare one, because the symptoms don’t present simultaneously. In many cases, the symptoms disappear and then reappear months later. It is easy to mistake the condition for something else, she said.
Carey was finally diagnosed at UIC.
“At first, they offered me all kinds of hope that I’d be able to play hockey again,” he said.
But most days, he’s so racked with pain that if he decides to take a truck delivery job from his dad’s company, he has to stay up the previous night to be ready to move in the morning.
“I can’t work. I can’t do anything,” he said.
So far, the medications he takes only exasperate his condition, he said, adding that he gets by on a low-level narcotic.
Carey also has been denied disability income as well as entry into an federal study group of Behcet’s because “they said there isn’t enough evidence that I have it.”
Kochan and Carey grew up a block apart near Midway Airport. They met during what Carey calls his best year since being diagnosed, 2011. He was scheduled to leave for Poland on a hockey trip but had suffered an injury on the ice. His flight was delayed a week while he recovered.
“We hung out every day during that week,” he said.
Kochan, who is originally from Poland, graduated from Columbia College in 2012. She recently lost her job as an account executive at an occupational health company and now waitresses at Courtright’s Restaurant in Willow Springs.
Carey wonders if she lost her first job because of his constant needs. She has had to leave work to rush home on several occasions after he fell and couldn’t get up.
“I love him more than anything in the world,” she said. “I just wish we could find some answers.”
One good thing that has come from all this, Carey said, is that his pain has made him more sensitive to the suffering of others.
“Don’t ignore people in trouble, help them,” he said.
Recently, the Blackhawks organization surprised him with free tickets to a game.
“It made me cry,” he said. “I’m not giving up hope. I want to beat this thing. But I need help to beat this thing.”
To learn more, visit the American Behcet’s Disease Association website at www.behcets.com, the Bernie Mac Sarcoidosis Translational Advanced Research Center (STAR) at hospital.uillinois.edu/Patient_Care_Services/Pulmonary/Our_Areas_of_Expertise/Sarcoidosis.html, the American Autoimmune Related Diseases Association at aarda.org/ or the National Institutes of Health at health.nih.gov/topic/Autoimmune