Avon resident forms local diabetes support group to help those coping with disease
Special to the Daily
If you go …
What: Meta T1D diabetes focus group.
When: 7 to 8:30 p.m. the first Thursday of each month.
Where: 440 Nottingham Road, Unit 9, Avon.
Cost: Free; donations to the nonprofit Diabetes Activist organization accepted.
Other diabetes support
To guide and support individuals with Type 2 diabetes, the American Diabetes Association is offering a free 12-month program called Living With Type 2 Diabetes. The program, available in English and Spanish, provides information and offers free guidance to help people learn how to manage diabetes at regular intervals throughout the year.
People can enroll in this free program by visiting diabetes.org/type2program, calling 800-DIABETES, or texting Type2 to 69866 to learn more about the program in English or Tipo2 to 69866 to learn more about the program in Spanish.
AVON — While most 7-year-olds aspire to become astronauts, teachers, veterinarians or firefighters, Betsy Ray dreamed of finding a cure for diabetes. More than four decades on, she is still fighting not only for a cure but to help others with this very serious, misperceived disease.
In her quest to share awareness and help others, the 52-year-old Avon resident holds monthly meetings in her home to educate not only those with diabetes but also their family members.
“I am teaching a lifetime shift, a shift in the paradigm to give people with diabetes and those without it optimal physical and emotional health,” she said.
Tim Hargreaves recently attended one such meeting, as his 16-year-old son was diagnosed with Type 1 diabetes three years ago. When his son, an avid lacrosse player, was 13, his father noticed he was leaning on his lacrosse stick, appearing tired and urinating more frequently than normal. He was taken to a doctor and immediately diagnosed with diabetes, which altered the family’s life. Others are not so lucky.
“Little kids are dying because they are not being diagnosed. They are healthy, active and have no body fat, so they are not the ‘typical’ perceived profile of a person who would be diagnosed,” Ray said.
She knows of whom she speaks. At age 3, she slipped into a diabetic coma and awoke five days later into “a new world of Type 1 diabetes, for which there was and still is no cure.”
For the next four years, Ray was admitted in life-threatening circumstances to emergency rooms two to three times a week. Finally, she decided enough was enough and took matters into her own hands, asking “why,” “what” and “how” at every opportunity.
The long run
What makes Ray’s story different from most is that she is one of only 3,500 Type 1 diabetes survivors to be awarded medals over the past 40 years.
“When you live more than 50 years, they give you a medal,” she said. Recently, she received medals from drug manufacturer Eli Lilly and the Joslin Diabetes Center in Boston, a leader in diabetes care worldwide.
“I was the healthiest person to receive the medal that day,” she said.
Medalists in the early years were placed on a study by Joslin to determine the common elements of their success in an attempt to distill it for everyone. The studies revealed no quantifiable information that medicine considered usable, but the answers supported Ray’s suspicions that supporting health was critical, along with basic disease treatment, as the key to diabetes success.
There are children’s diabetes camps, which Hargreaves’ son and Ray attended as a child.
“My son always says he doesn’t want to go, but he comes back happier when he has been there,” Hargreaves said. “Every night, we have to wake up and test his blood sugar. When he goes to the camp, it is a vacation for us, as well, because diabetes is 24 hours a day, seven days a week, 365 days a year with no time off.”
According to the American Diabetes Association, there is a “complex process that burns glucose and uses the resulting energy to produce the molecule that fuels our individual cells. It’s up to structures inside the cells called mitochondria to produce that molecule, called ATP. The ATP made by the mitochondria produces energy for all the reactions in our body.”
“If you don’t make ATP, you can’t get out of bed in the morning, and you also can’t go to sleep because you need energy to sleep,” Ray said.
Type 1 diabetes is an autoimmune disease similar to multiple sclerosis, lupus and rheumatoid arthritis where the immune system hosts an ongoing attack on the insulin (beta) cells of the pancreas, making access to nutrients impossible and causing excess glucose to enter the bloodstream.
According to findings from Gallup-Sharecare, the world’s largest data set on well-being, “seven of the 10 states and communities with the highest diabetes rates are in the South, with Alabama, West Virginia, Mississippi, Tennessee, South Carolina and Arkansas each having more than 14 percent of their population reporting having been diagnosed with diabetes,” overwhelmingly Type 2.
“Unfortunately,” Ray said, “Colorado is No. 1 for diagnosis of Type 1 diabetes, the most severe form, in the United States.”
“If we want a better outcome, we have to understand what’s wrong with the current environment, and how to change or mitigate it on an effective level,” Ray wrote on her website, Diabetes Activist, http://www.diabetesactivist.com.
“I have a second mortgage bigger than the first mortgage, and that second mortgage is diabetes,” Ray said, but added hopefully, “I work outside of the medical practice box, but I work to complement providers who are inside the box. Together, we can make the paradigm shift and improve outcomes for people with diabetes.”
The greater community is invited to join a Celebration of Pepi’s Life on Friday, Sept. 20, at the Gerald R. Ford Amphitheater.