Each year more than 13,000 children in the United States are diagnosed with Type 1 diabetes, according to the Juvenile Diabetes Research Foundation. That is 35 children per day whose parents will likely monitor every aspect of their care and treatment until they leave home.
When these children become adults, they are suddenly on their own, said Dr. Greg Clark, an endocrinologist at Johns Hopkins. Complicating things, most adult diabetes cases are Type II, which is sometimes called adult onset diabetes.
“There aren?t many adult endocrinologists who specialize in Type 1 diabetes,” he said. “After they?ve left their pediatrician most [Type 1 diabetics] end up with a doctor who doesn?t understand the disease at all.”
This is why Clark is launching a new transitional care program teaching young adults to treat Type 1 independently.
A person with Type 1 has an immune system that destroys cells making insulin, a hormone critical to processing sugar in the blood, Clark said.
Clark, diagnosed with Type 1 at age 11, knows what it is like to take insulin injections and test his blood sugar by pricking his finger for blood four to six times daily. “It?s a very difficult disease to treat because it requires so much on the part of the patient,” he said.
Clark establishes relationships with patients with Type 1 in the pediatric clinic at Johns Hopkins before they transfer to his adult practice, he said.
The University of Maryland Medical Center has a similar transitional program. Young adults learn to keep in touch with their endocrinologist without nurturing parents calling the shots, said Debra Counts, director of pediatric endocrinology.
“In the pediatric model it?s ?our disease,? ” Counts said. “In the adult model it?s ?my disease.? ”
When patients with Type 1 move into college dormitories, they need to bring much more than a refrigerator and television. They should pack two blood glucose meters with extra batteries. They should also give to their resident assistant a glucagon kit in case they have severe low blood sugar, according to The Juvenile Diabetes Research Foundation.
Morgan Gilsan, a 20-year-old who attends Villa Julie College, said she sometimes thinks people do not know there are two types of diabetes.
“It just seems like they?re forgetting how difficult it is for people with Type 1 diabetes and how we need help,” Gilsan said.
She has learned to handle the daily routines on her own, and her three roommates know what to do if her blood sugar gets too low. Gilsan said she feels comfortable with Clark because he has Type 1.
“I went to a couple of other doctors and they were either too strict or too lenient,” she said. “They didn?t really understand the disease very well.”
Although there are medications available to combat Type 1, they have serious side effects. Clark is currently working on stem cell research to find a safe cure.
