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Afflicted With a Rare Disease Called HIBM, Daniel and Bobby Darvish Have Devoted Their Lives to Finding a Cure 

Thursday, Jul 5 2012
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On a winter evening in 1997, two dozen members of Los Angeles' Persian-Jewish community gathered in a spacious house in Woodland Hills.

The home belonged to Houshang and Shokouh Darvish, Persian Jews who had fled Iran for Southern California in the wake of the revolution. And by that night, everyone knew that the couple's two sons — Daniel, 30, and Bobby, 28 — had a long struggle ahead of them.

Both recent graduates of medical school, the brothers looked just fine. A discerning eye might have seen a slight strain in their steps, no more.

click to flip through (9) PHOTO BY ANNE FISHBEIN
 

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But their lives were slowly beginning to change. Bobby Darvish could no longer line up his fingers to play chords on his guitar. Daniel Darvish found it difficult to run up and down stairs.

And so that night, the Darvishes' friends sat in the living room and listened attentively to a presentation by the brothers. The young physicians explained that their symptoms had led them to self-diagnose a disease they called a "peculiar muscular disorder." At the time, the disease was nameless — so rare that the Darvishes could find only two medical reports that mentioned it.

But they did know the disorder likely would leave them both in wheelchairs in around 10 years — unable to walk or lift their arms for extended periods of time, their fingers naturally curling inward. They also knew the condition disproportionately affected Persian Jews.

"What's the chance of two physician brothers being affected by the same disorder?" Bobby says. "It's almost like we were being called upon to do something."

They needed money to start an organization, to fund research, Shokouh Darvish told the room. She pulled out her checkbook and wrote a check for $1,000. Others followed suit, and by the time the five-hour meeting ended around midnight, they had raised $18,000.

The Darvishes donated the money to a small laboratory that was researching the disorder. But that was only the beginning. They continued fundraising, and their nonprofit Advancement of Research for Myopathies was formally incorporated in 2000. Within five years, they would open a lab of their own, which is almost entirely funded by donations channeled through the nonprofit.

Finding a cure for the disease they eventually identified as hereditary inclusion body myopathy, or HIBM, would consume the whole family. Shokouh Darvish quit her job as a preschool teacher to become a spokesperson for their nonprofit organization. The brothers' wives devoted themselves to fundraising. And their father, until he died several months ago, labored to make more money, hoping he could give a sum to his children to help the cause.

But no one has been more committed than Bobby and Daniel Darvish, now ages 43 and 45. Both began using wheelchairs about six years ago. And both are working frantically for a cure while they are still able — even as they know it's probably too late for them.

"The reality is that people in wheelchairs have a shorter lifespan," Daniel says. "It's entirely possible that 10 years from now, neither of us will be here."

From the time Bobby Darvish was born in Shiraz, Iran, about two years after Daniel, the brothers always had each other. Their family left Iran during the revolution — their father, Houshang, a successful businessman with a family estate worth around $35 million, was suspected of being sympathetic to the shah. They bounced around Europe with the intention of heading to America.

But their mother couldn't get a U.S. visa and was sent back to Iran. Their father returned for her, and the brothers ended up in New York, living with a family they had never met before.

"We were each other's parents," Bobby says. "If he had a toothache, I stayed up at night to nurse him."

In 1981, the family reunited and moved to Southern California with virtually no money. Daniel, and then Bobby, attended Pierce College in Woodland Hills.

Bobby took a class with a physics professor who had taught his brother.

"He recognized my name and said, 'Do you know Daniel? He's the best student I've had in 20 years, and I expect the same thing from you,' " Bobby says.

When Bobby earned an F on the first test, he could read the disappointment etched on the professor's face. He pulled a 100 on the next test. The class set Bobby on the path to medical school — the same path as his big brother. (Daniel went to George Washington University School of Medicine; Bobby went to Ohio State University College of Medicine.)

These days, Bobby works at the Veterans Administration in West Los Angeles, teaching other doctors and fitting veterans with medical equipment, such as wheelchairs and stair lifts. He likes the VA, even though it pays about a fifth what he could earn in the private sector. Working for the government is less demanding, which gives him more time for HIBM work.

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