Editor's Note: Vince Ei is a San Jose State Journalism student who wrote this piece for Patch as part of a class assignment.
Artificial sugars, like Splenda, are scientific advancements on their own and for diabetics like Art Cohen they sure help sweeten dietary restrictions he’s faced since he was diagnosed with Type 1 diabetes at 13.
Discovered almost 40 years ago sucralose is the main ingredient in Splenda and touted as the no-calorie sweetener. It has similar properties to sugar: taste, color, composition, but does not drastically raise blood sugar.
“You can eat all the sugar you want and you won't get diabetes,” Cohen, owner and CEO of BlueLight Cinemas said.
(which translates to "diagnosis: Type 1 diabetes"), an 18-minute film about a teenage boy diagnosed with Type 1 and how he and his family copes with the complexities of the disease. The event is hosted by the nonprofit Carb DM, which works to bring awareness to the disease, and was founded by the mom of a Type 1 child.
Getting diabetes by eating tremendous amounts of sugar is one of the biggest myths about diabetes. Diabetics aren't barred from sugar either they just have to prepare for it. Cohen says if he wants a piece of cake, he'll eat it, but he prepares with an insulin shot half-an-hour before.
The general misunderstanding is that diabetes is all the same. Some aren’t aware there are two types.
Type 1 was called juvenile diabetes, creating the misconception that only children get Type 1 and is convalescent. It is actually a lifelong autoimmune disease that can be diagnosed at any age.
Insulin is a hormone produced by the pancreas that turns sugar into energy. Type 1 diabetics don't produce insulin, and doctors don't know why. Some believe genetics is a factor, but Cohen has no family history of Type 1, nor does anyone else interviewed for this article.
Often when people think of diabetes it is the symptoms of Type 2 that come to mind. Type 2 diabetics have a functioning pancreas, but have become immune to insulin. It is the most common type of diabetes and is mainly caused by obesity and nonactive lifestyles. Adults are usually diagnosed with Type 2, but more young people are diagnosed now because of rising obesity rates.
The truth is that any age group is susceptible to Type 1 and 2.
In the case of Mike Lawson of Berkeley, even doctors don't understand this truth. He was diagnosed with Type 2 diabetes when he really had Type 1. Lawson has latent autoimmune diabetes in adults (LADA), which caused his pancreas to stop creating insulin gradually instead of suddenly, as with most cases of Type 1.
Out of all Type 2 diabetics, around 20 percent of them have LADA.
Until he was 23 Lawson's health was normal, but then he started feeling an “unquenchable thirst,” a symptom of Type 1 diabetes. Other symptoms presented included fatigue and unusual weight loss. The doctor should have administered specific test to determine which type he had, Lawson said.
“That simple C-peptide test would've told me if I had Type 1 or Type 2 and would tell a doctor what type of treatment to use, and that test was never done because I was an adult and overweight so it was just assumed that I had Type 2.”
He was given metformin pills and “was told good luck” by the doctors without guidance on how to deal with this disease that would change his life. Metformin helps the body respond to insulin by reducing glucose production in the liver. But Type 1 diabetics have no insulin, and the treatment did not help Lawson who remained unhealthy even when regularly seeing a doctor.
“I felt like I was not given proper attention,” said Lawson. “It's a very weird position to be in... when you go to a doctor and they tell you you have something as life altering as diabetes, it blind-sides you.”
Socializing became troublesome. Going out to eat turned into cautious ventures up and down the menu. He had to keep track of everything he ate and reduced the amount of alcohol he drank.
Lawson saw several doctors and felt like he was being accused of something because his blood sugar levels did not match his lifestyle changes. It wasn't until a year later when a nurse practitioner asked for his nonexistent C-peptide results. He took the test that day, was put on insulin and his condition immediately improved.
“I often joke that diabetes is the best thing that ever happened to me because I've met some amazing people doing diabetes advocacy but I've also come to understand my body so much better than I ever had before diagnosis.”
Lawson, now 31, stands 6 feet, 175 pounds. At the time of his diagnosis, which he describes as a wake-up call, he was 285 pounds. He could have faced many fatal situations, but was responsible and took care of himself. A responsibility his mother says she could never handle if he was diagnosed as a child. He feels fortunate for his late diagnosis, too.
“It's like something you just can't escape. It's always on your mind so living through teenage years without it I'm very glad that I didn't have to because those were hard enough.”
But for Menlo Park resident 17-year-old Haley Owens, living with Type 1 through those years was unavoidable. She was diagnosed at 5 years old, and has to deal with gastroperesis, one of many complications that come with diabetes. Especially difficult for her is explaining her condition to the naïve.
“Every time I've tried to explain it to someone I don't know very well,” Owens said, “they just automatically assume it's Type 2 diabetes and they say really ignorant things like, 'oh, is that the fat disease,' or 'is that like you can't have sugar.'”
Owens is mostly guarded about her diabetes, usually unwilling to check her blood sugar or give herself shots in public. When she meets new people and feels her blood sugar going low, she won't do anything about it to avoid the awkwardness.
Haley relies greatly on twin sister, Savannah, as a support system who has her own internal quarrels with how Haley’s disease is perceived.
“I'm really calm as a person, but the only time that I've ever freaked out at my friends is when they can't understand my sister's condition and the severity of it and how dangerous it really is. It really isolates me because I feel like no one understands a lot of the time,” Savannah said.
Middle of the night runs for juice have turned Savannah into a very-prepared and protective sister who still carries juice boxes with her at all times and learned to fill and attach Haley's insulin pump, give shots and count carbohydrate-to-insulin ratios with required precision.
The memories of finding Haley in a bad condition haunt Savannah and inform her view of true friendship. When friends offer to look after Haley at parties, she’s reluctant.
“I won't let it happen, under any circumstance,” Savannah said. “Whether it's going to end a friendship or it's not. My friends have to be really flexible with it. And if they're not considerate then they're not going to be my friends.”
As the sisters prepare to move on to college next year they are faced with new challenges; Haley, who has never been away from her family for more than nine days could end up living on her own. Plus there’s the explaining of her diabetes all over again to a new group of people.
Tamar Sofer-Geri, the founder of Carb DM and mother of Type 1 diabetic 12-year-old Tia, will soon face some of same things Haley did. Sofer-Geri understands what the future holds, but she has current dilemmas to think about. During Halloween, the candy was the least of her problems. Tia running around the neighborhood is a huge concern for her.
“Each stage in life is a new stage of diabetes management and those stages can happen from one day to the next and you can never be fully prepared for it.” Sofer-Geri also said. “Just as you think that you've got this figured out, you've got this nailed, well something happens. They get sick, they have a growth spurt, they start a new sport, they start a new school, there are social issues that go with that and you're constantly having to look at how to deal with that.”
Living with diabetes is like a snowflake, according to Sofer-Geri, “No two days are ever alike.”
Sofer-Geri likens a Type 1 child like “a newborn that never grows up.” She watches Tia closely in the day making sure her blood sugar doesn't shoot up and gets up in the middle of the night to make sure Tia's blood sugar doesn't plunge either.
Diabetes does not have a cure and Type 1 is misunderstood; both reasons for people like Sofer-Geri and Cohen to want to draw attention to the disease. Type 1 has been growing at a rate of 2.5 to 4 percent a year in the U.S. and parts of Europe, according to a Wall Street Journal report.
“With the number of people that have diabetes and the number of people that are passionate about diabetes advocacy, I don't think the numbers are proportionate and I think diabetes affects way more people than there are diabetes advocates,” Lawson said.
Cohen said, “Awareness of diabetes becoming more prevalent in our society is important. The more people that are aware of the problem will encourage more companies to find solutions to help current people afflicted with the disease as well as ultimately find a cure.”