Except from “Living with Type I Diabetes” BY JESSICA WRIGHT, from The Roanoker Nov/Dec 2012
Fifteen-year-old Caela Cohen of Lynchburg is mature beyond her years. She has to be.
After being diagnosed with Type 1 Diabetes at the tender age of five, Caela quickly had to learn how to take care of herself beyond the typical day-to-day routine. And reaching the level of understanding she has today certainly did not come without challenges.
“My first thought (after the diagnosis) ‘am I going to die?” Caela recalls. “I remember being scared and I would hide under the bed because I didn’t want the (insulin) shots.”
By six, she had learned how to give herself the shots. “If I have to do it, I want to do it myself,” Caela says was her attitude. “Caela was independent early on,” says her mother, Caroline. She was involved with JDRF (formerly known as the Juvenile Diabetes Research Foundation), gave a speech in front of hundreds of people and had the attitude of “this won’t stop me.'”
At seven, it was discovered that Caela also had Celiac disease, which can cause a lack of glucose absorbance. The diagnosis led to Caela being put on an insulin pump. When she hit puberty, Caela developed postural orthostatic tachycardia syndrome (POTS), which causes a fall in blood pressure upon standing and leads to dizziness.
She didn’t want to take her insulin because it affected the POTS,” Caroline says. “Type 1 can be associated with a lot of other conditions and it’s hard to balance them all”.
With puberty came a whole new set of challenges that Caroline describes as «an emotional journey of acceptance:’ Caela was anxious and fearful of the insulin and, unfortunately, these emotions can trigger changes in blood sugar.
“For a two-month period, I didn’t want to get out of bed because I was afraid of a panic attack,” Caela says.
By 14, Caela says she became more interested in socializing with her friends than taking care of her diabetes. “I didn’t deal with it at all; I was self-conscious,” she says. “I didn’t want anyone to know I had diabetes, so I tried to live as if it didn’t exist.”
To help her cope with the emotional distress, Caela was admitted to Cumberland Hospital in New Kent, a facility for children and adolescents with chronic illnesses. There, she learned anger management skills, as well as how to best manage her diabetes.
“It was a life-changing experience and brought our family closer together,” Caela says. Now, Caela’s attitude toward diabetes is “never give up.”
“Every day is a new day. It does get hard, but giving up just leads to more complications,” she says. “I’m going to keep going until one day there is a cure.”
Type 1 Diabetes was not new to the Cohen family; Caela’s father Jordon was diagnosed with the disease at age 13. But parenting a daughter with the same illness presented different trials.
“I thought, ‘how can I take care of her when I struggle sometimes myself,” Jordon says. “I put a lot of it on Caroline because I didn’t know what to expect.”
Plus, Jordon explains, each diabetes patient is unique, some having a harder time with managing the illness than others.
“We try our hardest; we all just have a different set of circumstances,” he says. ”And you never know how your body will react.”
To help other families in similar situations, he and Caroline spearheaded a support group in Lynchburg called TIDE (Type 1 Diabetes Experience). Since developing the group, they’ve met many newly diagnosed families who were overwhelmed and fearful after the initial diagnosis.
“We meet once a month and also have family get-togethers once a month,” Jordon says. “We are also trying to develop a mentor program.”
The group hosts guest speakers to help participants learn as much information as possible about the disease.
Caela’s younger sister Grace has been a big supporter as well, says Caroline. She is conducting a fundraiser at her school for the annual Step Out: Walk to Stop Diabetes.
For more information on the support group, visit tlde.org.