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

Or, to use an anatomical analogy, Bobby Darvish calls himself the "heart" of their organization. Daniel, he says, is the "brains."

Daniel leads research at the lab. In order to funnel donations to the lab's work, Daniel takes no salary. He lives off disability payments and his wife's small salary, which she earns as the lab's administrator.

PHOTO BY ANNE FISHBEIN

At the Darvishes' lab

PHOTO BY ANNE FISHBEIN

At the lab founded by the Darvish brothers, interns toil to find a cure.

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• Sandra Darvish
• Yadira Valles-Ayoub
• Bobby Darvish
• Rare Diseases
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More reserved than his younger brother, Daniel speaks insistently, trying to clearly explain the work he is determined to see through to the end.

"For me, it has still not reconciled. I'm very dissatisfied [with my condition]," Daniel says. "I think dissatisfaction is a good thing. It's what drives me every day."

They both first noticed their physical strength was diminishing when Bobby was still in medical school. (Daniel had just finished.) Shokouh Darvish, now 62, recalls noticing that her sons weren't as happy when they called home. She chalked it up to the stress of their work.

Then, when Bobby came home for Christmas, she asked him to wring the water out of a sweater she'd just washed.

"I can't do that," Bobby was forced to admit.

Daniel's weakness also was becoming visible. He fell often and ripped his pants, typically at the knees, he says.

No doctor could tell the brothers what was wrong, and they ended up diagnosing themselves after about a year of searching for answers. Bobby inspected his own muscle biopsy under a microscope, and they both pored over medical literature. When they found vague references to HIBM in a few reports, they realized the descriptions perfectly aligned with their symptoms.

In the early 2000s, there were only a few, scattered researchers who studied HIBM — and none made it their first priority, Bobby says. Initially, the Darvishes sent these researchers checks from their fundraising efforts and hoped for the best.

At the time, HIBM research centered on finding the mutated gene that caused the disorder. Once that was discovered, scientists could develop a treatment that targeted the abnormalities in the gene.

But progress came slowly. The various labs studying the disorder did not share information with each other. Instead, they tried to beat each other to the punch, Bobby says. After all, scientists who find a new gene can patent it, and then receive royalties from researchers who perform tests with the gene.

"It was fairly discouraging, to the point where finally we just got fed up and said, 'Let's set up our own lab,' " Bobby says.

Daniel had specialized in internal medicine in school, and for a few years after completing his residency, he worked in nonsurgical cosmetics — hair removal and laser vein treatment — as well as in other areas, earning about $500,000 annually. It took him about four years of training himself and reading the literature on muscles to get fully up to speed.

"Money was not as important as [HIBM research], so I focused on research," Daniel says. "In retrospect, I don't know if I made the right decision. If you make more money, you can do more. But if I had chosen that other path, I don't know that our research would be where it is today."

Daniel began his own work on uncovering the gene, and he shared his findings with the other researchers — an unorthodox move. Other scientists responded by speeding up their own efforts, and in 2001, an Israeli lab found the gene.

"Everything was sparked when the gene was found," says Dr. Marjan Huizing, a scientist at the National Genome Research Institute in Bethesda, Md.

In an ironic twist, the mutated gene that caused HIBM was one that had already been described, meaning it was not patentable or profitable. The researchers who had hoarded their work, it turned out, had been selfish for no reason.

The mutation causes a deficiency of sialic acid — a sugar that helps muscles accept proteins, says Dr. Yadira Valles-Ayoub, director of research and development at the Darvishes' lab. Without enough sialic acid, muscles grow steadily weaker.

"Your DNA of that gene has 2,000 bases. One of them is semi-broken," Valles-Ayoub says. "There are mutations where a bunch of bases are broken, a bunch of bases are missing. In [the Darvishes'] case, it's one single mutation."

Daniel remembers the first time he saw his brother in a wheelchair.

"It was a reminder that I needed to get things done faster," Daniel says in a low, slow voice. The moment, he says, was "heartbreaking." "Knowing that I had this disease wasn't as hard as knowing Bobby had this disease."

Bobby says it's been harder on his brother.

"I accepted [the disease] very early. I went through the stages of loss very fast. I found new ways to enjoy things," he says.

Not so his brother: "Danny is a fighter. He's never really truly accepted it."

Before his HIBM progressed, Bobby Darvish had a picture-perfect life. He had finished medical school and had married an "exotic brunette with shiny hair and multicolor eyes." They threw lots of parties in their Sherman Oaks apartment — she was a fabulous hostess and cook.

When they first married, Bobby was still capable of most physical functions, though his wife had to help him put on his socks. But as the effects of HIBM worsened, it strained their sex life and caused deep fault lines in their relationship. They divorced in 2002. By that time, Bobby was limping and had started using a cane.