Fellowship in the Diabetic Community, Orange County Register
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.
Nearly 26 million adults and children were believed to have the disease, diagnosed or undiagnosed, in 2010, according to an estimate by the Centers for Disease Control and Prevention. That's 8.3 percent of the population. As obesity rates keep climbing, some predictions say as many as 1 in 3 American adults could have the disease by 2050.
In California, the diagnosed cases of diabetes alone account for 8.9 percent of adults across the state, even without undiagnosed estimates added.
“The big engine of the pandemic of type 2 diabetes is a more sedentary lifestyle than we've had in years past, also food choices that are sub-optimal, and ever-growing obesity,” said Dr. Daniel Nadeau, the new program director of Hoag Hospital's Mary & Dick Allen Diabetes Center.
Nadeau co-authored a book called “The Color Code: A Revolutionary Eating Plan for Optimum Health,” which argues in favor of a diet rich in brightly pigmented foods, like red peppers and yellow turmeric, to maintain health and prevent disease.
He says the key to reversing the upward trend of diabetes is exercise and a return to the whole-food diets of previous generations, and other cultures. They ate more plants and less meat, long before processed foods were introduced.
“It's only in the last 50 to 100 years that we've introduced massive quantities of meat,” Nadeau said.
Nationally, about 10 percent of Latinos have diabetes, roughly twice the rate of non-Hispanic whites. Part of the problem appears to be genetic, says Dr. Ping H. Wang, a professor of biological chemistry at UC Irvine School of Medicine, and director of the school's Center for Diabetes Treatment and Research.
“Of course, lifestyle and environmental factors always influence the level of diabetes,” he said. “But the underlying genetic composition probably plays a huge role. Although we don't really know exactly where the genetic defect is.”
Hernandez says family is a powerful, connective force in the Latino community, which can be used to reinforce good or bad habits.
“The way we think and behave around food and lifestyle, and family relations, is very different, and it matters a lot when it comes down to diabetes,” he said. “The family circle among Latinos is very tight, and that can act very positively, but because it's so tight it can also be a very powerful influence in directions that might be misguided.
“For example, there's a prevailing myth about insulin causing blindness, or insulin causing death, because maybe there was a tia (aunt) or tio (uncle) in the family who had diabetes and were put on insulin, unfortunately at a very late point, where they were already advanced in terms of complications, and what followed was not caused by insulin but rather diabetes itself.”
Diabetes can be isolating, but family members, who Hernandez jokes can be considered to have “type 3” diabetes, share in it.
“When you have diabetes, everyone around you in your family ultimately is affected by it, touched by it,” he said. “We welcome and want the mom, the dad, the brother and sister, everyone in the care circle, to participate.”