It’s become an odd sort of civil war
As a person living with Type 1 diabetes, 34-year-old Angie Hashemi-Rad must prick her fingers and give herself insulin every day to stay alive.
But nothing irritates her more than having people mistakenly assume she has Type 2 diabetes – and then suggest she “cure herself” by eating less sugar and exercising more.
“I’m sorry, but I hate Type 2. I call it the wuss version,” she wrote on Diabetesdaily.com in response to an online article headlined: “Which is worse: Type 1 or Type 2 diabetes?”
“NO TYPE 2 COULD EVER DO WHAT I HAVE DONE FOR THE PAST 28 YEARS,” she wrote. “IT IS NOT THE SAME. NOT EVEN CLOSE. HOW DARE YOU.”
As rates of Type 2 diabetes soar, tempers are flaring in the diabetes blogosphere, where many people with Type 1 diabetes are lobbying for a new, distinct name for their condition in hopes of clearing up misconceptions and securing more resources to put toward a cure.
With Type 2 diabetes – formerly known as “adult-onset” – people have trouble putting insulin to use in the body to metabolize dietary sugars. Obesity is a major risk factor, and diet, exercise and medication can help prevent the condition in people at risk or treat the disease once it develops.
Type 1, by contrast, used to be called “juvenile diabetes” because it is often present from childhood. People with the condition produce no insulin at all and will die unless they regularly dose themselves with the hormone.
Many people don’t understand those differences, and because Type 2 diabetes is far more common it receives the majority of the attention.
Type 1’s often hear “You don’t look like a diabetic!” or are assumed to have caused their illness by overeating.
“Typically, people have no idea what diabetes is or how it works,” says Chicago’s Laura Fitzgerald, 21, who was diagnosed at age 6. “They assume I did it to myself.”
Diabetes educator Riva Greenberg has repeatedly advocated for a name change, hoping that greater recognition will lead to more stem cell research.
“When the two types are lumped together, it’s hard for organizations committed to finding a cure to Type 1 to really get funded,” says Greenberg, author of “50 Diabetes Myths That Can Ruin Your Life.”
“If policymakers don’t understand the difference between the two – they are thinking people need to move more and eat less – it’s going to be hard to help cure Type 1.”
Some people with Type 2 diabetes say they are being unfairly stigmatized for developing a disease that has a strong genetic component. Those who exercise regularly are often shocked to be diagnosed, because they assume only overweight people are at risk.
At the same time, controlling diabetes with lifestyle changes and medication isn’t as easy one might think.
Susan Amati of Chicago, who has Type 2 diabetes, said people shouldn’t be quick to judge.
“Bad behavior may contribute to the cause,” she said, “but many people may not behave any differently than the average person, but get diabetes. I ate and dieted very carefully, but until I got the proper medicines, my blood sugar control wasn’t good.”
While all people with diabetes are characterized by elevated blood sugar, Type 1 and Type 2 are essentially two distinct diseases.
Type 1, which is considered more devastating, is an autoimmune disorder; the body has attacked itself and permanently destroyed the cells in the pancreas that make insulin.
Insulin is needed to transport sugar into the cells where it can be metabolized and used for energy. If too much sugar (or glucose) stays in the blood, it can lead to serious damage to the tissues, eyes, nerves, heart, gums and teeth.
People with this condition need insulin to live. They receive it either by injecting themselves with a syringe or receiving infusions through a pump attached to their body.
Type 2’s, on the other hand, do produce some insulin. The problem is the insulin can’t do its job. When the body resists insulin, sugar builds up in the blood, causing the same negative effects as Type 1.
The condition often goes undiagnosed for years – it’s estimated that a third of the cases of high blood sugar are untreated in the U.S. – which means Type 2’s can have more complications, including high blood pressure, high cholesterol, heart disease and stroke.
It’s possible for Type 2’s to reduce their insulin resistance, usually through lifestyle changes such as diet and exercise and medication. In some cases, they can reverse the onset of diabetes altogether, if it’s caught early.
Those genetically predisposed to Type 2 may even be able to stave it off.
“There’s a lock and a key,” says obesity specialist David Edelson, an assistant clinical professor of medicine at Albert Einstein College of Medicine. “The key is a bad lifestyle that leads to weight gain around the gut.
“My Type 1’s work out fastidiously and watch their diet. If my Type 2’s did what my Type 1’s do, they’d probably cure themselves.”
Competition for research funding also causes tension between the two camps, says Ryan Luce, the cofounder of corengi.com, a website aimed at helping people with Type 2 learn more about clinical trials.
Not surprisingly – since Type 2 diabetes is more common and has more treatment options – there are three times as many clinical trials for Type 2 as for Type 1 on the government’s Web site, Luce says. For industry-sponsored trials, the ratio is 5 to 1.
More than 23 million Americans have some form of diabetes. Between 90 percent and 95 percent of the cases are Type 2, though some people have features of both, meaning both insulin resistance and autoimmunity, says Dr. Judith Fradkin, the director of the division of diabetes, endocrinology and metabolic diseases at the National Institutes of Health.
By 2050, health officials fear that as many as one in three U.S. adults could develop Type 2 diabetes because of the aging population, growth in high-risk minority groups and the extended lifespan of people with diabetes, according to an analysis by the Centers for Disease Control and Prevention. One in 10 U.S. adults has diabetes now.
Anxious to change the course of the disease, public health officials are aggressively preaching prevention. But the message applies only to Type 2’s; when Type 1’s hear Dr. Mehmet Oz talking about “preventing diabetes” on “The Oprah Winfrey Show,” they say it perpetuates the notion only one kind of diabetes exists.
“There is underlying resentment because Type 1 never goes away like Type 2 can and often does,” says Natalie Kolok, cofounder of parentingdiabetickids.com, whose 9-year-old twins have Type 1.
Diabetes educator Greenberg thinks a name change is worth fighting for, especially since Type 1 diabetes often comes on in childhood and “when children hear ‘die-abetes,’ all they think is that they’re going to die,” she said.
She proposes “betasin” – as in, “isn’t it a sin my beta cells (in the pancreas) gave up?” – or “mellitus,” the second half of the full name of the disease, which is “diabetes mellitus.”
Hashemi-Rad says she doesn’t really care what it’s called; she just wants people to understand that she didn’t get diabetes because of what she weighed before her diagnosis and that managing Type 1 diabetes is emotionally and physically draining.
When people tell her, “Oh, it’s too bad your parents fed you so much sugar” or “If you just follow this diet you can stop taking insulin!” her anger rises to what she calls “ridiculous levels.”
A name change “would help make it clear they are not the same in any way, shape or form,” says Hashemi-Rad, of Tonka Bay, Minn. “I can’t stand trying to explain the difference. … It’s exhausting.”
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