By Paul E. Kandarian Globe Correspondent,August 9, 2015, 12:00 a.m.
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 Disease Clinic and Research Center 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. Information is available on www.hugsformito.org. There are many online support groups including Goldberg's in South Easton, MA., information on which can be found at www.hugsformito.org. .
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.”
His battle now is to help children with the disease, he said.
“I know a lot of people in the Mitochondrial Disease 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 email@example.com.
Great article about how Michael Goldberg is working to fight Mitochondrial Disease far beyond his own experience. He wants to make a big difference for others, as well. Please share and help if you can.
Read about my good friend Michael Goldberg spreading the word about Mitochondrial Disease! He is an awesome guy and an inspiration to so many!!!
Michael Goldberg is married to Howie's cousin. If you aren't familiar with Mitochondrial Disease, take a look and learn more about it. It affects about 1 in 4000 in the US. To be honest, I never really knew what it was but through the posts that he often posts on his FB page, Michael has done amazing things to help raise awareness and he totally ROCKS!!!!!
Way to go Michael Goldberg! So proud to call you my friend! You are doing an amazing job raising awareness! Kudos!
My cousins husband, Michael Goldberg, has been an activist to bring awareness to this debilitating disease that up until about a year ago I knew nothing about. He has continued to raise awareness and funds to help find a cure, while fighting this disease himself. I am so proud of him and his wonderful, supportive wife, Judi Lapides-Goldberg.
Michael Goldberg great article about you in today's Globe South. Kudos to you for making a difference!
Mito made the Boston Globe newspaper...please donate if you can to this very important cause, we need a Mito clinic in the Boston area. Thank you Michael Goldberg for all your hard work!!!