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Type 1 Diabetes - TrialNet e-news - April 2010

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Twins around the country support TrialNet research

Of the thousands of families supporting TrialNet research, many include twins. As one would expect, twins share more than an obvious outward appearance. Twins share genes and can share risk for type 1 diabetes.

In fact, identical twins share the same set of genes, making it much more likely that they will both develop type 1 diabetes if one of them is diagnosed with the disease. If one half of a set of fraternal twins develops diabetes, the other twin has about a 7 percent chance of developing the disease (similar to that of a non-twin sibling). In contrast, the risk of an identical twin developing type 1 diabetes if the other twin has been diagnosed is much higher: approaching 80 percent over a lifetime. This points out that although genes are very important in determining risk for developing type 1 diabetes, they aren’t the whole story. Environmental factors, such as viruses, have been suspected to trigger diabetes in a genetically at-risk person.

Three sets of twins who have one twin participating in the Oral Insulin Prevention Study include Charlie and Sam Odell from Rochester, MN; Marc and Mariel Jones (pseudonym) from San Jose, CA; and Grant and Luke Mitchell from Nashville, TN.

Charlie and Sam, Rochester, Minnesota

Pharmacist Laura Odell had previously heard about TrialNet, so when she learned that TrialNet Chairman Dr. Jay Skyler would be making a presentation at the Mayo Clinic, where Laura works, she signed up. After that presentation, Laura and her husband decided to have their three children screened. Her husband, Kevin, also a pharmacist and certified diabetes educator, has type 1 diabetes.

Charlie and Sam

Charlie and Sam

The Odells do not live near a TrialNet screening location, so they ordered a TrialNet test kit by mail. They then took their children and the kit to a local lab for the blood draw. The kit, with the children’s blood, was sent to TrialNet’s central lab for analysis.

Laura explains, "When we received the results, we learned that Sam did not have the autoantibodies indicating an increased risk for type 1 diabetes, but Charlie had three. Our daughter Grace, who was age 8 at the time, had one autoantibody."

After considering their options, they enrolled Charlie in the Oral Insulin Prevention Study. Grace and Sam enrolled in the Natural History Study, which closely follows relatives of people with type 1 diabetes to learn more about the disease.

Twice a year, the entire family makes the 100-mile trip to Minneapolis for their TrialNet study visit. "We make an event out of it and try to do something special afterward, like going to the Mall of America and the Lego store," says Laura.

Now age 7, Charlie and Sam are involved in sports and Boy Scouts and love anything Star Wars.

Marc and Mariel, San Jose, California

Gary and Adriana Jones (pseudonym) decided to have their son, Marc, tested through TrialNet when they were at an event at the University of California San Francisco (UCSF) 2 years ago, when the twins were 7 years old. Marc’s twin, Mariel, had been diagnosed at age 2, so they were naturally concerned about Marc’s risk.

Marc and Mariel

Marc and Mariel

According to Dad, "After we learned Marc’s results were positive for the autoantibodies for type 1, we had a lot of questions. We met with Dr. Gitelman and Kathleen Fraser at UC, and they were very honest and thorough, which had a lot to do with our decision to enroll Marc in the Oral Insulin Study. That was 2 years ago. With the close monitoring Marc receives in the study, we will know early if he develops type 1 diabetes."

"Marc likes being involved in the study, especially since he’s helping research and the greater community. We drive up to UCSF every 6 months, and he looks forward to his study visits. I can see why - he is treated like a king!"

Marc and Mariel, now age 9, enjoy swimming and participate in a summer swim team. Marc also likes music, plays keyboard, and is in Cub Scouts.

Grant and Luke, Nashville, Tennessee

Last April, 13-year-old identical twins Grant and Luke Mitchell were at their annual well visit when sugar was discovered in Luke’s urine. After performing the standard finger prick test, their doctor immediately referred Luke to an endocrinologist at Vanderbilt University.

Charlie and Sam

Luke (left) and Grant with sister, Mia

Says Mom," The endocrinology staff at Vanderbilt was wonderful! We had no family history of type 1 diabetes and knew absolutely nothing about it. We had to learn everything—the terminology, the shots, everything. After a few visits, they gave us the TrialNet brochure and told us about screening for family members. Grant and our daughter, Mia, then age 4, said, "Let’s all do it."

"As a mother, I thought it would be a great experience for our children to see this side of science. Of course, with no history, we were all curious to see if anyone had the type 1 diabetes autoantibodies. It turns out that Grant did and qualified for the Oral Insulin Study. It’s one thing to have a blood draw, but we were concerned about enrolling Grant in a study where he’d receive actual treatment. After talking to Dr. Russell, we decided to do it."

Grant said, "I hope it can keep me from having to go through what Luke’s gone through. But, if it doesn’t work for me, I’m happy to help someone else."

Grant and Luke, now age 14, enjoy competitive sports, including football, basketball, and track, and are active in their church’s youth program.

Join TrialNet in the fight against type 1 diabetes!

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