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A New Reality

For millions of Americans impacted by diabetes, their daily routines will never be the same,  but it doesn’t stop them from living.

After a month-long absence from school, which doctors attributed to the flu or stomach bug, Elizabeth Forrest was diagnosed with Type 1 diabetes at age 10—just days before Halloween in 1999. Her new reality included pricking her finger to test her blood sugar and injecting insulin multiple times a day. And because her family didn’t fully understand the disease just yet, Forrest didn’t even go trick-or-treating that year.

“When you have diabetes, people generally assume you can’t have sugar and treats, and my family thought that too. I have a very vivid memory of sitting in my living room and my mom allowing me to choose my favorite candy from my sisters’ bags and only being able to eat them in moderation over the next few weeks,” she says. Fortunately, Forrest and her family learned that her disease would not stop her from enjoying all of the fun things about being a kid.

Treating Diabetes
Approximately 30 million people in the U.S. have diabetes—some  7 million of those are undiagnosed, according to the American Diabetes Association. Every year, 1.5 million more people are diagnosed. Type 1 can happen at every age, not just children, and occurs when the body does not produce insulin, a hormone needed to get glucose from the bloodstream into cells. It is a disease that even those who are diagnosed  as children, like Forrest, will have to manage for their entire lives.

Food is medicine for those with Type 1. “Most people can eat a sandwich and not think about it. If I have a sandwich, I have to calculate the carbohydrates in the cheese, meat, bread, and if I have chips or an apple with it,” says Forrest. “I add it all up to figure out how many units of insulin I need. As a kid, even if I wasn’t hungry for all of it, I had to eat every bite because of the calculations that had gone into it.”

Forrest wears an insulin pump, which affords her more flexibility, and has something called a CGM—continuous glucose monitoring device—on her arm that is constantly testing her blood glucose and sending the data to her phone. “It’s hands-down the best technology for people with Type 1, ever,” she says, noting that’s her opinion as someone who has been doing this for 19 years. “It helps prevent the highs and lows. … Low blood sugar can end in a coma; high blood sugar can end in nerve damage. The worst is death. It’s extreme but not uncommon. CGM is really helpful and is a huge change in how people can lead full lives with this disease.”

Type 2 diabetes is the most common form and happens when your body is resistant to insulin, unable to keep blood glucose at normal levels.

While Type 1 can only be treated with insulin, Type 2 can be managed with lifestyle changes, oral medications, and in some cases insulin.  Dr. Jose Mandry, who is board certified in internal medicine and endocrinology, and a clinician at Endocrine Associates of Florida in Ocoee, says 95 percent of the patients he sees have Type 2.

“There are multiple reasons which can include a genetic disorder, but other components from a person’s lifestyle and habits play a role,” he says. “There is a large preponderance of obesity in the U.S. as a majority of people’s lives become more sedentary due to technological advances and the rapid availability of fast food. Diabetes is also common in the Latin American population.”

Diabetes can lead to several other health complications. “Diabetes remains one of the leading causes for blindness, end-stage renal diseases, heart attacks and strokes, and is the No. 1 cause of amputation of a lower extremity,” Mandry says. “Fortunately, most of these can be prevented with good control of a patient’s A1C levels (an average of blood glucose levels over three months). The higher that number is, the more likely the patient will suffer those consequences.” Endocrine Associates,  which caters to those speaking English and Spanish,  offers treatment for conditions related to the endocrine gland including diabetes, thyroid disease and lipid abnormalities, as well as nutritional counseling with a registered dietitian and clinical research trials.

The key for living a full life despite a diabetes diagnosis lies in seeking treatment sooner than later.  “Oftentimes, patients  don’t  seek treatment until they have been diabetic for years,” he says. “If they come in early, our system of care involves a lifestyle change and early use of medications when justified. When it comes to approaching diabetes, we are a bit more aggressive so we can get it under control. We feel diabetic patients should be self-empowered, so we provide the tools that may otherwise be lacking in the community.”

There is no cure, but Mandry says in some cases losing weight through diet and exercise or bariatric surgery can help people go off medications and reduce their sugar. “There are effective ways to treat diabetes and live a normal life,” he says.

Dancing For a Cure
At the time of her diagnosis, Forrest was a student at Millennium Middle School in Sanford. After her dance class had put on a performance for family and friends, she approached the principal with an idea to host a show to raise money and spread awareness about diabetes. That first show, “Dancing for Diabetes,”  was small,  says Forrest,  with about 50 dancers and only 100 people in the audience of the middle school auditorium. Later this month, Forrest will host the 18th annual show at the Bob Carr Theater in Orlando, with a crowd of nearly 2,000.

This year’s event will take place on Nov. 10, featuring hundreds of dancers of all ages. Throughout the years, Forrest estimates they have raised over $300,000. But Dancing for Diabetes is more than just a one-night event, it’s a full-blown nonprofit, with a board of directors, standards and a structure to allow growth. It’s more than Forrest ever imagined when she was 10. The organization hosts family-friendly events in the community, educational seminars for teachers and local health care staff, and an annual full-day conference featuring speakers from around the country.

But perhaps one of the programs closest to Forrest’s heart is the kids and teen dance classes offered by the organization. Free for those with Type 1 diabetes, these Saturday morning classes are a chance for these children to be comfortable with their disease. “Everyone in the room has the disease. You’ll see a lot of finger pricking and juice boxes while everyone is learning to dance,” she says. “It’s one hour a week where they can escape into another reality and just play and learn without having to explain their disease. We’re creating a space where kids can be kids.”

These same students will perform on Nov. 10, putting a face on the disease so many are working hard to cure.

This article originally appeared in Orlando Family Magazine’s November 2018 issue.