Group supports those with Type 1 diabetes
Evanston 10/14/12 Left to right, Type 1 Diabetes Lounge leader Merle Gleeson, Kris Keller, Debbie Torgan and Arlata Thursby swap stories regarding Type 1 Diabetes during their meet-up at Curt's Cafe. | Michelle LaVigne ~ Sun-Times Media
• To learn more about the Type 1 Diabetes Lounge visit its website at t1dl.org/ or its Facebook page at www.facebook.com/pages/Type-1-Diabetes-
Lounge, or contact Gleeson at email@example.com.
• The next meeting is Nov. 7, 2012, when the speaker will be Dr. Romy Block, of Northshore University Healthsystem, speaking on diseases associated with T1D.
• For more information on Type 1 diabetes, visit www.jdrf.org; for general information on diabetes, visit www.diabetes.org/.
Updated: October 26, 2012 12:12PM
WILMETTE — Gather together people with Type 1 diabetes and chances are they won’t look a bit alike.
People with what was once called juvenile diabetes will be young, old, male, female and of every ethnicity. Some will have learned as children and others as adults that their pancreas has betrayed them, refusing to produce the insulin they need to control sugar levels in their blood and derive energy from food.
They depend on daily injections of insulin to stay alive, and pay constant attention to their glucose level.
Beyond that, they share membership in a clan that is tiny even within the larger diabetes community where most people deal with Type 2 diabetes, once called adult onset diabetes.
With that rarity (of the almost 26 million people in America with diabetes, only about 3 million have Type 1) can come frustration, misconceptions about their disease and a deep sense of isolation.
“One thing I’ve learned is that no two cases of Type 1 are the same,” Chicagoan Debbie Torgan said last week. “No two days are the same, and you can really use a lot of support and advice. That’s why you need groups like this.”
“This” refers to the Type 1 Diabetes Lounge, started in 1998 by Wilmette resident Merle Gleeson as a support group and education resource for people who, like her, have Type 1, or T1D.
For 14 years, the group, which usually meets at the Wilmette Public Library and is the only Chicago-area group of its kind for adults with T1D, has offered programs by medical and technology specialists on T1D research, management techniques, lifestyle questions and more.
Perhaps more importantly, the Lounge is a place to find friends who know the same challenges and deal with the same misconceptions; who can commiserate and offer practical advice, compare experiences and support each other.
November is National Diabetes Awareness Month; last week members of the Lounge gathered in Evanston ahead of next month’s activities to talk about living with T1D and living life to the fullest with the help of advancing technology and strong support systems that include the Lounge.
“I learn something at every single meeting I come to, sometimes in ways that have dramatically changed my life,” Kris Keller of Palatine said.
Evanstonian Marlene Nicholson agreed: “I can’t tell you the relief I felt coming to the meetings,” With this disease, you keep thinking ‘Why can’t I get it right? I keep screwing up.’ But here you realize that you’re not screwing anything up. It’s how the disease works.”
Nicholson and Keller both developed T1D as adults; so did Deerfield resident Chana Anderson, who, like Nicholson, developed it after having gestational diabetes during pregnancy.
All had to battle the perception that adult diabetics all have Type 2. Unlike T1D, which is an autoimmune disorder, the more widespread T2D is a metabolic disorder in which the body produces little insulin, is resistant to it, or both.
Unlike T1D it can respond, to varying degrees, to a regimen of diet, exercise and medication as well as insulin. Even many physicians, including some of Keller’s and Nicholson’s in the past, were certain that their adult patients didn’t have T1D. That’s changed as research has advanced, and as many of the original T1D patients grew up, and beyond the early deaths once forecast for them.
Gleeson is one of those children; she learned she had T1D when she was 10. So, too, are Torgan, who was 9 years old; Wilmette resident Stuart Wolf, who learned he had Type 1 at the age of 12; and Evanstonian Dawn Davis-Zeinemann, who was 6 years old when a coma generated the diagnosis.
Wolf remembered thinking he was going to die of his disease. So did Torgan.
They and their families were greeted by then-current medical wisdom, which held that the disease would attack them so steadily, despite strict insulin regimens, that they couldn’t expect to live much beyond their fourth decade.
To greater and lesser extents they felt isolated, despite access to things like summer camps for children with diabetes.
While Davis-Zeinemann had family support, she said, “it’s frustrating when the outside world will think ‘Oh, she’s having problems (with diabetes) because
she’s not controlling it properly with exercise or diet, she can’t control herself,’ and that’s just not true. This isn’t that kind of diabetes.”
Gleeson agreed. Despite remarkable advances in delivering insulin with pumps, as well as traditional injection methods, and advances in accurately measuring blood sugar with continuous glucose monitoring systems, those with T1D can’t look to medicine to make a recalcitrant pancreas more efficient;
Their artificially introduced insulin must constantly be managed to make it works as naturally as possible.
“Our life revolves around numbers,” Gleeson said. “Numbers of insulin units, carbohydrate units, glucose. I like to say that diabetes is an art, not a science.”
Their pain is familiar to Patrick Reedy. Reedy, executive director of the Illinois chapter of JDRF (formerly the Juvenile Diabetes Research Foundation) said last week that his organization can help; its major mission is fundraising toward a cure, but it also provides resources like mentoring programs, online communities and other support.
Such support was thin on the ground when Gleeson and Anderson asked questions, and hunted down literature. The advent of the Internet made information from groups like JDRF and the American Diabetes Association, among others, more available, something Glenview mom Arleta Thursby appreciated when her son Tommy was diagnosed a few years ago.
For Thursby, though, finding others who deal with T1D, and having their support, is of paramount importance: “Our endocrinologists are absolutely wonderful, but they’re not the ones living with the disease … I’ve learned 99 percent of what I know through other parents, and groups like this.”
Getting support and knowledge about T1D, and finding role models with T1D, like actress Mary Tyler Moore, helped him view the disease in a positive light, Wolf said.
“In a perfect world, I wouldn’t have diabetes, but I can look at some of the positives it’s taught me. I’m much more aware of how to lead a healthy life, I’ve learned in life, just like with diabetes, everything we do has a short term, mid-term and long term consequence. That’s not a bad lesson to learn.”