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Curtis Aikman, 7 poses for a portrait with his family, left to right, mom Donna, sister Hannah and dad Scott at their home in Amherstview, Ontario on Tuesday, December 28, 2010. Curtis has type 1 diabetes and has a pump that administers insulin to him as needed. (Pawel Dwulit/The Globe and Mail)
Curtis Aikman, 7 poses for a portrait with his family, left to right, mom Donna, sister Hannah and dad Scott at their home in Amherstview, Ontario on Tuesday, December 28, 2010. Curtis has type 1 diabetes and has a pump that administers insulin to him as needed. (Pawel Dwulit/The Globe and Mail)

Wanted: A new name for Type 1 diabetes Add to ...

If there's one thing Lara Abramson is tired of hearing, she says, it's onlookers who insists that people with diabetes shouldn't eat sugary treats.

Ms. Abramson leads a summer camp in the Halifax region for children with Type 1 diabetes, a diagnosis she received at age 6.

Each year, she listens to kids talk about having to defend themselves when an adult catches them eating a cookie. But, in fact, people with Type 1 diabetes can eat sugar as long as they balance their carbohydrate and insulin intake.

Rebukes from the self-appointed "diabetes police" are a sign of public confusion about the differences between her incurable disease and Type 2 diabetes, which is preventable with healthy eating and regular exercise, Ms. Abramson says.

"But we're all given the stigma of being overweight and lazy," she adds, "regardless of the type of diabetes we have."

As rates of Type 2 diabetes surge, a small but vocal group of people with Type 1 are protesting online about being lumped in with Type 2. Leading the charge is diabetes educator Riva Greenberg of Brooklyn, N.Y., who argues that Type 1 is being eclipsed by Type 2 - and should be renamed.

Poor recognition of Type 1 is stalling the search for a cure, Ms. Greenberg told the Chicago Tribune in an article published in November.

In the Type 1 community, Ms. Abramson says, the common response to the article has been, "I've felt like this for a long time."

The article ignited debate on blogs and online forums such as Diabetesdaily.com, where members came up with alternative names for Type 1, such as "autoimmune pancreatic dysfunction."

But Canadian experts suggest the name-change campaign is a fringe movement.

"I'm not sure that it's a big issue," says Ian Blumer, Toronto-based author of several books on diabetes. Dr. Blumer adds that not one of his colleagues or patients has discussed the idea of a name change for Type 1, which represents 5 to 10 per cent of diabetes cases in Canada, he says.

Diabetes has already undergone a name change within the past generation, notes Dr. Blumer.

Type 1, formerly known as juvenile diabetes, is typically diagnosed in children and teenagers, although it can strike adults. The disease is incurable, with no known cause, and patients must test their blood and take insulin several times daily.

Type 2, previously called adult-onset diabetes, is associated with high blood pressure, high triglycerides (blood fats), abdominal obesity and a family history of Type 2 diabetes. Although it's a degenerative disease, research suggests that lifestyle changes can help prevent or delay the onset of Type 2.

Then there's gestational diabetes, which puts babies at risk of excessive birth weight and mothers at risk of developing Type 2 later in life.

All forms of diabetes inhibit a person's body from regulating the amount of sugar (glucose) in the blood.

Since outdated terms - "juvenile" and "adult-onset" - are still being used inappropriately, Dr. Blumer says, renaming Type 1 would only add to the confusion. "I just think it would be chaos."

Scott Aikman, who lives in the Kingston area, says he doesn't see the need for new names. But he is annoyed by people's misconceptions when they meet his seven-year-old son Curtis, who has Type 1.

"It bothers me when people say, 'He's going to get better, right?' "

Mr. Aikman says he's frustrated by newspapers, pharmacies and health units that discuss "diabetes" without specifying the type. He adds that public health campaigns tend to focus on prevention of Type 2, so people assume that diabetes is "something that you've done to yourself."

People with Type 2 should not be subjected to discrimination either, says Dr. Blumer, adding that Type 2 has strong genetic as well as environmental risk factors.

"What we should do is to educate the public to not blame anybody," he says.

Advocacy groups emphasize the need for solidarity among people with diabetes.

More than nine million Canadians have diabetes or prediabetes, according to the Canadian Diabetes Association. Although treatment of the disease varies depending on the type, most of the complications - including vision problems as well as kidney and cardiovascular disease - are shared.

The association provides information on all forms of diabetes on its website, as well as through awareness campaigns, community events and newspaper supplements during November, Diabetes Awareness Month, notes the organization's president, Michael Cloutier. "We also ensure that innovative and world-class diabetes research projects for Type 1 and Type 2 diabetes are funded through our research grants," he says in an e-mail statement.

According to national communications manager Randi Garcha, the association has not received letters or e-mails regarding a name change for Type 1 diabetes.

Nevertheless, Ms. Abramson predicts that a growing network of Type 1s will lobby for a new name as a "quick fix" to dispel myths about the disease, she says.

Public education takes years, she points out. Meanwhile, "we're all dying for the perception to change."

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