OSWEGO COUNTY - A diagnosis of Type 1 diabetes changes lives.
But it doesn’t have to mean an end to a wonderful life.
Many people in Oswego County live with the disease every day. They go to school and work, they play sports, they have fun and they live life.
The only difference between them and those without diabetes is their pancreas doesn’t work correctly.
That’s one of the pieces of information those with diabetes want to share during the first of its kind forum set for 6 p.m. Nov. 6 at CiTi BOCES in Mexico. The forum, put on by the newly formed T1D Oswego County group, will include panelists ranging from a six-year-old to teens to young adults and older adults who will share their experiences living with Type 1 diabetes or being in a family affected by Type 1 diabetes.
According to the Centers for Disease Control, Type 1 diabetes (previously called insulin-dependent or juvenile diabetes) is usually diagnosed in children, teens, and young adults, but it can develop at any age.
The CDC says a person with Type 1 diabetes has a pancreas that isn’t making insulin or is making very little. Insulin is a hormone that enables blood sugar to enter the cells in your body where it can be used for energy. Without insulin, blood sugar can’t get into cells and builds up in the bloodstream. High blood sugar is damaging to the body and causes many of the symptoms and complications of diabetes.
Julie Chetney, of Oswego, a founder of the T1D Oswego County group, has been living with Type 1 diabetes for about 16 years. She herself doesn’t have it, but two of her four children do.
Son Jake was diagnosed right before his second birthday. He is now a senior at Oswego High School. Her daughter Claudia, was diagnosed at 11 and today, she is a 19-year-old sophomore at Le Moyne College.
As Chetney and her husband Brian tried to learn as much as they possibly could about this disease, they found there wasn’t much information and support in Oswego County.
“When this first happened, we had to go outside the county to be part of any type of workshop and connect with other families and health care officials,” she said. “It is important to hear from different people and hear about the experiences they’ve had.”
That’s exactly why she thought this T1D Oswego County organization was a good idea. “There are so many different challenges in different parts of life,” she said. “And it’s always so helpful to hear those different perspectives from other people. You can’t survive without the support of other parents.”
The T1D Oswego County group began its efforts by visits to Oswego County Legislature committee meetings by Julie Chetney and others. Then the group received a proclamation from the legislature.
But the big event is the Nov. 6 forum.
“I get phone calls every month from parents looking for information and support,” Chetney said. “The great thing about this panel is it is such a diverse group — adults who have diabetes, kids with diabetes, health care professions, family members. There are kids and families out there who could use this as a resource.”
Chetney said a group like this and the Nov. 6 forum are even more important today because more and more children are being diagnosed with Type 1 diabetes. She said there are 68 school-aged children in Oswego County with Type 1, while a few years ago, there were only about 17 kids with the disease.
In the future, the T1D Oswego County group hopes to hold more forums, with events already scheduled for March 4 and June 3. Chetney said future events might be the same kind of panel setup as Nov. 6 or the events could be different. She said it all depends what parents, guardians and those with diabetes want to know and learn.
“It really depends on what people want to know about,” she said. “We simply want the opportunity to reach out and bring together people to issues with people living with the disease and those caring for someone with T1D.”
The panel discussion is open to any interested community members. Participants may attend two different panels discussions; one consisting of children ages six-19, and another consisting of adults 20 and older.
“Having such a diverse group of panelists will offer great insight into all life stages of those living with T1D,” said committee member Leanna Cleveland. Panelists include not only children with type 1, but also friends, parents, nurses, “all giving insight into all those who play a role in the lives of those living with the disease,” Cleveland noted.
Anjali Aviles, 6, Type 1 diabetes. Anjali is a first-grader at Fitzhugh Park School and would like anyone her age to know that they did nothing wrong to have diabetes. Anjali will share thoughts on how at the young age of 6 she takes care of her body, eats what everyone else does, and simply takes medicine at every meal.
Claudia Chetney, 19, Type 1 diabetes. A sophomore at Le Moyne College, Claudia has lived in a world of T1D for 15 years after her brother was diagnosed at age 1 and she was later diagnosed at age 11. Claudia will share her views on day to day challenges explaining, “Some days you will win the fight, and other days you’ll be defeated.” Claudia brings a wealth of knowledge as she has served as a Team Type One ambassador representing student athletes’ talking to kids about T1D and how to care for and more importantly support those living with it.
Lea Hickey, 19, friend and college roommate of a person with T1D. Lea is a sophomore at Le Moyne College and will share her thoughts on how to support a person with Type 1 diabetes with patience, understanding and communication. She will offer advice on how she remains a continuous guide to her roommate.
Hunter Nichols, 13, and his mom Becky Kimberly. Hunter was diagnosed with Type 1 diabetes at age 3. Despite not knowing life without T1D, Hunter admits he still gets angry with it all, but lives a normal life best he can by taking care of himself. Becky will share how having a child with T1D has changed so much about the way her family eats, plays, sleeps, travels and much more.
Rachel Lagoe, 20, a SUNY Oswego education major, was diagnosed at age 15. Rachel will share her own personal “ups and downs,” and the worries that come with every day of her life. She looks forward to a world with a cure for this disease but until then she is happy to teach others.
Ed Carney was diagnosed 35 years ago and was told about the many things he could not do. But Ed went on to do those exact things people told him were not possible. He competed in Division 1 sports, ran a marathon and is now a sheriff’s deputy with Oswego County.
Annalee Harrell is a school nurse in the Oswego City School District with 15 years experience with children with Type 1 diabetes. Annalee knows the importance of communication with students and families and the need for a 504 plan for all students with T1D in the academic setting. As a school nurse, she has been praised by many parents for her kindness, compassion and willingness to accommodate and advocate for children in school settings.
Nestor Aviles is a parent of child with T1D. Nestor describes living with diabetes as both rewarding and heartbreaking. While he will share stories of making strides, pushing hard, and overcoming obstacles Nestor also has many memories of wiping tears of frustration and meeting defeat in his young child who is living each day facing so many “What if’s?”
Jamie Dollahite has had T1D for 63 years with many highs and lows. Jamie has minimal complications and has taught clinical nutrition giving her a different view of diabetes than the average person. Jamie will share her lifelong experiences in controlling glucose levels, making appropriate food choices, exercise and having family support.
Amy McLaughlin is the parent of a seventh-grader who has had T1D since age 3. She will share her strength as a mother and the struggles that she has experienced raising a child with T1D and the worry she carries 24 hours a day, 7 days a week. Amy also finds it important for people to understand that a child or adult with type 1 is still capable of doing everything and eating everything that a person without T1D.