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Fellowship in the Diabetic Community

Categories: Diabetes Care

Eleven years ago, Manny Hernandez was diagnosed with diabetes. At first it was misdiagnosed as type 2, but he and physicians got that sorted out. Hernandez actually had type 1, requiring regular insulin shots.

“That's when it really sunk in,” he says. “That I had this.”

And it wasn't going away.

Hernandez, a Venezuelan-born engineer and techie who lives in Berkeley, is president of the Diabetes Hands Foundation, a group he co-founded with his wife, artist Andreina Davila. Hernandez also started the first social network for diabetics, the English-languageTuDiabetes.org (“Your Diabetes” in Spanish). It has a companion site in Spanish, EsTuDiabetes.org. The two sites have more than 50,000 registered users from around the world. More than just warehouses for information about diabetes symptoms, dangers and treatments, it's a gathering place where users can share stories, ask and answer questions and support one another.

“What we continue to find is that over and over, there's a recurring theme about loneliness,” Hernandez said. “Aside from all the elements about diabetes management – it's chronic, and it takes a toll – the elephant in the room is that most people with diabetes, sometimes as they are getting diagnosed, even in many cases decades after, remain very closeted about it.

“There's elements of the stigma that's attached to it: elements of shame; being annoyed about questions they get asked. They just don't talk about it with anyone else. It becomes a huge opportunity that gets lost, because in not talking about it, you also don't talk about it with people from whom you can learn, and people who get it.”

Only about 5 percent of diabetes cases are type 1, which used to be called juvenile diabetes, so named because it usually strikes children or young adults. (Hernandez was 30 when he was diagnosed; he's 41 now.) The bodies of type 1 patients can't produce insulin from the pancreas. Type 2 sufferers, by contrast, have blood-sugar (or glucose) levels that fluctuate, often wildly. Type 2 usually is brought on by poor diet and obesity.

Diabetics must monitor their glucose levels closely. Unregulated levels, if untreated, can lead to severe health problems, including cardiovascular disease, loss of limbs, blindness and death.
Hernandez uses a wireless glucose monitor that looks like an iPod. He wears an insulin pump that injects the hormone into his body through a tube as needed. “You're like a RoboCop,” he said. “It gives you a little more quality of life. But it's not natural, right? The thing sticking out is like a tail, almost.”

During an interview, not long after breakfast in downtown Santa Ana, his devices buzz and chirp. His blood sugar had been running low, so he drank some orange juice. Now the levels are running high.

Back and forth, all day, every day. This is what it's like.

“Every time you're gonna eat, drive, go to sleep …” Hernandez said. “There are beeps and alarms and things that go off. … and it's good, it keeps me safe, from going too low or too high. Even when you're trying to be a little oblivious about it, even if there are no alarms, you'll feel it. You get too low, you're feeling confused, it's hard to concentrate. Too high, it feels like this tiredness overwhelming you.”

He said he's been on the insulin pump for only about a year. He didn't know how a particular feature on the gadget worked, so he went to a pump users' group.

“When I entered this room, there were about 12 to 15 people just like me,” he said. “We started going around the room, telling some about themselves or some challenge. It was like, wow, I had never felt so belonging since I had diabetes. I felt understood.”

Prevention, and advances in technology, are critical to stemming the tide of diabetes cases that has grown at an alarming rate in the United States.