The numbers just didn’t make sense.
Diagnosed with type 2 diabetes in 2002, Manny Hernandez tackled it with everything he had. “I switched to a super-healthy, low-carb diet. I trained for my first half-marathon. I lost 25 pounds. I took my medication faithfully. I was the healthiest I’d ever been. But my blood sugar wouldn’t stay in an optimal range.”
Hernandez kept exercising, though more moderately, after running the Valley of the Sun Marathon in Phoenix, AZ, in early 2003. He tried “pretty much every metformin-based drug combination and dose on the market.” Yet his fasting blood sugar levels wouldn’t drop below 150. “Something wasn’t normal,” he says.
Perplexed, his family doctor sent him to an endocrinologist who measured levels of diabetes autoimmune antibodies and C-peptide (a substance that correlates with insulin levels) in his blood.
The results: Hernandez didn't have type 2 diabetes at all. He had LADA – Latent Autoimmune Diabetes in Adults. His immune system was slowly attacking his insulin-producing beta cells. And his insulin levels were low enough that he needed daily insulin shots.
Hernandez wasn’t alone. An estimated one in ten people diagnosed with type 2 diabetes actually have LADA. This form of diabetes is like slow-moving type 1. But it’s usually mistaken for type 2 because it happens in adulthood, and doesn’t require insulin right away. Like type 2s, people with LADA often have some insulin resistance; their cells don’t respond readily to insulin’s signals to absorb blood sugar. People with LADA often struggle with mysteriously high blood sugar despite their best efforts at control. And they usually need insulin years sooner.
“For me, it was intimidating to suddenly have to give myself insulin injections every day for the rest of my life,” Hernandez says. “You may have heard a million times growing up that you need to take a pill, exercise, and eat healthy meals, but taking daily injections is something we’re certainly not prepared for.”
Hernandez’s experience was life-changing in many ways. In 2007 he and his wife, Andreina Davila, founded the online communities TuDiabetes.org and EsTuDiabetes.org. “We had worked as a team on living a healthy lifestyle and gathering information ever since my diagnosis,” he says. “My wife is with me every step of the way.” A year later, the couple also started the nonprofit Diabetes Hands Foundation, which runs the two social networks. Today Hernandez, 44, of San Francisco, is senior vice president of member experience at Livongo Health, a digital health startup focused on diabetes. And he’s learned through years of intensive social networking and advocacy that his LADA experience has been typical…and not so typical.
“There was a lot of type 1 and type 2 in my family,” he says. “Aunts, uncles, grandparents. My Dad had type 2. The funny thing is, my mother tried to lower my risk by keeping me away from sugar and candy and desserts as a child. A lot of people, including doctors, think if diabetes happens early in childhood it's type 1, after that it has to be type 2. We know now that’s not always the case.”
As Hernandez’s natural insulin levels fell, his first insulin treatment was a once-a-day shot of long-acting insulin. As his own insulin levels continued to drop, his blood sugar became very hard to control despite this daily injection. “The insulin journey for a person with LADA has a lot of ups and downs,” he says. “I had a lot of wild swings, sometimes my glucose was as high as 400. Finally, it was time to add bolus insulin for better control.” He now uses an insulin pump.
Online and in-person, he’s met many others with LADA. Some waited years for a diagnosis, as their doctors struggled to control their blood sugar with drugs meant to treat someone with type 2. “I try to encourage everyone with diabetes to be their own advocate,” he says. “With a chronic condition, you have information your doctor needs in order to give you the best care. If you’ve been struggling with type 2, if your blood sugar isn’t in control even though you’re following lifestyle steps and adhere to your medication schedule, it’s worth talking with your doctor about the possibility of LADA.”
People with LADA eventually need insulin, but finding that out is a big deal, he says. “It can be a brutal realization, but it’s also a relief to finally understand what’s happening and get the treatment you need.”
Today, he now considers himself a type 1… with a history of LADA. “People with LADA are like a bridge between type 1 and 2,” Hernandez says. “In the diabetes community, there’s sometimes this undertone of ‘my diabetes is more severe than yours’ between type 1s and type 2s. The truth is that both types present major challenges. No one understands that better than someone who’s had LADA.”