When he was 6 years old, Los Angeles artist Ted Meyer had two life-changing experiences. He won his first art show prize after copying a flamingo drawn by an older friend. Secondly, he was diagnosed as suffering from Gaucher Disease after intensive bouts of pain in his knees and hip bones.
"It felt like someone was slowly breaking your bones for days on end," Meyer recalled.
Initially, his parents took him to several hospitals in the New York area, where puzzled doctors shook their heads and warned that they might have to amputate the boy's legs. Finally, a European intern at Mount Sinai Hospital recognized the symptoms of Gaucher Disease, but in the absence of any effective treatment at the time, all he could prescribe were painkillers.
Over the next year, Meyer's stomach distended, he was constantly fatigued and he bruised and bled easily. Doctors removed his large spleen when he was 7, but that offered little relief. And his persistent nosebleeds seemed only to worsen.
"I didn't go to school much, and I was the smallest kid in my class," the 47-year-old Meyer remembered. "I had to stay in hospitals three or four times a year, and there were some weeks when I couldn't move my legs at all."
Meyer's grandparents had emigrated from Lithuania, Poland and Russia. His parents were carriers of the abnormal gene that can cause the disease, but they were not affected. Meyer's older brother has Gaucher Disease, too, but a third brother never got it.
Between bouts of pain and hospitalization, Meyer developed his painting skills and eventually got a bachelor's degree in design at Arizona State.
His early works reflected his own physical struggles, and in the series "Structural Abnormalities," he depicted painted contorted structural images.
"I was at war with my body, and these paintings expressed my trapped and isolated feelings," he said. "My condition was so rare that there was no one I could talk to about it."
In his early 30s, Meyer underwent two sets of hip replacements, but 10 years ago, he started receiving the new enzyme replacement infusions and within six months showed dramatic improvement.
Now living in a combination apartment and studio at the Brewery Arts Complex in downtown Los Angeles, Meyer is a well-known graphic designer for magazines and Web sites and has written four popular books.
One of his eye-catching "Structural Abnormalities" paintings is on the cover of "Message to Elijah," an educational video on Gaucher Disease narrated by actor Elliott Gould.
Every two weeks, Meyer visits a doctor for enzyme therapy, though "after 10-12 days, I usually get tired and feel some pain," he said.
Long-haired and slim, Meyer would be taken as a healthy specimen on the surface, and he usually doesn't mention his affliction. One reason, he said, is that New Age devotees in California, who like almost every one else have no idea what Gaucher is, usually advise him to just take some herbs for his problem.
A major hurdle facing many Gaucher patients is the huge cost of the treatments, which can run to $200,000 a year.
"I am lucky that I have insurance through an authors' group, but even so, you can reach the $2 million lifetime cap in 10 years," Meyer noted.
Meyer is among an estimated 1,000 Los Angeles-area Jews of Ashkenazi descent with Gaucher Disease. Experts estimate that only about one in 10 is receiving proper treatment. Approximately 50,000 area Jews are carriers of the defective gene and could pass the disease to offspring.
The chief reason for the low treatment rate is that many Los Angeles doctors, including Jewish physicians, are not trained to recognize the symptoms of Gaucher, said Dr. Barry Rosenbloom, a UCLA professor and director of the Comprehensive Gaucher Treatment Center at Tower Hematology Oncology. The center is listed by the National Gaucher Foundation as the primary treatment facility in the Los Angeles area.
"Once correctly diagnosed through a simple blood test, Gaucher patients can be restored through treatment within one year," Rosenbloom said.
The Comprehensive Gaucher Treatment Center is located at 9090 Wilshire Blvd., Beverly Hills, (310) 888-8680.
Detailed information about the disease, as well as financial assistance, is available through the National Gaucher Foundation. Call (800) 925-8885, or visit www.gaucherdisease.org.