Festival sponsor to spread the word on genetic disease

Ted Meyer can describe the situation, but he can’t describe the pain.

The marrow in the Los Angeles artist’s bones would begin to swell and, quite literally, break them from the inside out.

Since 1998, Meyer has received a twice-monthly enzyme infusion to combat Gaucher disease, a rare and underpublicized condition affecting one in every 40,000 members of the general population — but one in 450 Ashkenazi Jews.

Prior to the days of enzyme therapy, the only cure for “bone crises” was to be wheeled to the hospital, shot full of morphine and vegetate in a drug-induced haze until the pain subsided.

Meyer — whose art reflects his vast experience with sickness and hospitals — hasn’t felt that unspeakable pain in eight years, thanks to those infusions (a procedure uninvasive enough that he usually works on the computer while receiving the IV).

With proper treatment, the child diagnosed with Gaucher’s today will not have to face the hardships Meyer did: nearly losing a leg at age 6, losing his spleen one year later and undergoing three hip replacements, the first at age 32 (he’s now 48).

His advice to all Jews: “Get tested.”

And at the To Life! festival, it is possible to take steps to do just that. Genzyme Theraputics, an organization devoted to combating rare genetic disorders, is one of the festival’s sponsors. Its local representative, Ginger Gradeff, will be manning a booth featuring Meyer’s art.

Gradeff, who works out of her Greenbrae home, traverses the Bay Area and, on occasion, the entire Pacific Northwest educating doctors on Gaucher disease and helping to identify potential patients. While even many doctors believe identifying Gaucher disease requires a bone marrow biopsy, Gradeff says the condition can now be uncovered with a simple blood test.

As with Tay-Sachs, carriers of Gaucher may show no symptoms. But if two carriers have a child, the chances of their passing on the disease expand exponentially. Symptoms include anemia (which results in lethargic behavior), weaker and more brittle bones, an enlarged liver and spleen, and thrombocytopenia, a low count and degradation of the blood platelets.

Gaucher patients may be only mildly affected — Gradeff notes that bloody noses or heavy periods due to the blood platelet condition are a common giveaway. Or the effects could be debilitating; instances of spleens and livers expanding to 40 times the regular size and causing patients to resemble pregnant women are not unheard of.

For those who can’t drop by Gradeff’s booth, she suggests contacting the National Gaucher Foundation at (800) 925-8885 or UCSF-Stanford Lysomal Disease Center at (800) 901-9997.

Meyer, meanwhile, stresses that he lives a “pretty normal life” and notes that the earlier doctors can treat the disease, the better a patient’s life will be.

The last eight years especially have been good for him. But before that?

“There was nothing [no treatment]. You’d hope you wouldn’t get sick. And if you did, they’d take you to the hospital and give you lots of morphine until it stopped hurting.”

Joe Eskenazi

Joe Eskenazi is the managing editor at Mission Local. He is a former editor-at-large at San Francisco magazine, former columnist at SF Weekly and a former J. staff writer.