Afflicted with Mitochondrial Disease, Michael Goldberg Champions Hospital Children

From Personal Diagnosis to Collective Mission — How Michael Goldberg Turned Mitochondrial Disease into a Movement for All Rare Disease

THE BOSTON GLOBE SOUTH

Afflicted with Mitochondrial Disease, Michael Goldberg aims to help other sufferers.

By Paul Kandarian

GLOBE CORRESPONDENT

AUGUST 09, 2015

Michael Goldberg of Easton always kept himself in shape, working in the fitness industry and also doing security work. While on security detail at Brockton’s Westgate Mall in 2012, his usually impeccable vision went blurry.

He started experiencing other issues, including lack of energy and breathing problems, so he went to doctors, but they couldn’t pinpoint the cause. Last December, he saw a pulmonary specialist who found he had mitochondrial disease, estimated to affect one in 4,000 people in the United States, according to Mito Action, a Boston-based advocacy group.

“I always kept myself fit, and though I had the usual aches and pains, I’d battle through it,” said Goldberg, 50, who no longer works because of the disease. “Until the last few years, when it’s taken over in a big way.”

He has since worked with advocacy groups to start a mitochondrial clinic at Massachusetts General Hospital to give patients one place to go for treatment, rather than going from doctor to doctor, as Goldberg said is the norm.

An effort has been underway since April to make that happen, he said.

The disease is genetic and largely affects children, Goldberg said, adding that his disease was probably dormant for a long time before recently manifesting itself.

“I could live another 20, 30 years if the symptoms are manageable,” he said. “Or it could kick in and I could be gone tomorrow. It’s different for everybody. When I look back at growing up, I was off my feet quite a bit, so it’s probably something I always had but really got aggressive in the last few years.”

"I could live another 20, 30 years. . . . Or it could kick in and I could be gone tomorrow. It’s different for everybody.’

His battle now is to help children with the disease, he said.

“I know a lot of people in the mitochondrial community, families who’ve lost children,” said Goldberg, who has a 21-year-old son who does not have the disease. “And I don’t want to see another generation have this. I don’t want to see more kids dying from this disease.”

Paul E. Kandarian can be reached at pkandarian@aol.com.