Screenings will be held in Fort Myers next week for families that have been affected by Type 1 diabetes to understand the natural history and mechanisms that cause the disease so it can, hopefully, be prevented and reversed someday.
Cape Coral resident Krissy Dollar's daughter Reagan was diagnosed with Type 1 diabetes on April 20, drastically changing the family's life.
Reagan will turn 4 on Nov. 19.
Dollar said the news about the diagnosis came as a shock.
"It was a shocker because we already had a diabetic in our family," Dollar said.
Her husband's nephew was diagnosed with Type 1 diabetes, also when he was 3 years old.
Now when Dollar leaves home with her daughter, she makes sure she packs a bag full of apple juice, snacks and insulin needles.
"You can't just pick up and go," she said.
In addition, Reagan has to eat at certain times.
Dollar said she tries not to let diabetes run her life because she does not want to prick her daughter's finger all day long, but she does have to make sure Reagan is OK.
She added that, at times, she feels that she is alone because there is not a lot of support in the community besides the Juvenile Diabetes Research Foundation. Dollar said parents who have questions or need someone to talk to are more than welcome to send her an email at firstname.lastname@example.org.
Dr. Desmond Schatz, professor and associate chairman of pediatrics for the University of Florida College of Medicine and medical director of the Diabetes Center said the TrialNet Natural History Study began in the mid 2000s to understand the natural history and mechanisms leading to Type 1 Diabetes, along with doing studies to aim at preventing and reversing the disease.
He is the principal investigator of the study.
"Type 1 diabetes is a tremendous burden to the individual and also a risk for major complications that include blindness, kidney failure and premature heart disease," he said.
Type 1 diabetes, which is an auto immune disease, attacks the pancreas and causes insulin to stop producing, can occur at any age. The most common symptoms of diabetes is losing weight, drinking a lot of fluids and urinating often.
The screening for the study is for individuals who are 1 to 45 years old who have a brother, sister, child or parent with Type 1 diabetes. In addition, the screening also can be done for those up to the age of 20 who have a cousin, aunt, uncle, niece, nephew, half-sibling or grandparent with Type 1 diabetes.
"Screening first-degree and second- degree relatives can identify people who have a high risk of developing the disease," Schatz said.
Dr. Asjad Khan, a pediatric endocrinologist in Fort Myers, said the nationwide study allows family members to know what the risks are for their other family members of being diagnosed with Type 1 diabetes at some point in their life.
"Once we know what is going on with the disease we can have a better time of fighting it and curing it and making it go away," Khan said about the study.
He said the study can measure antibodies from the immune system that causes a deficiency of insulin.
"The screening measures the four antibodies," Khan said.
Schatz said they take a specimen of blood during the screening to test the individual for islet cell antibodies. He said if the result comes back with one positive antibody, their risk of being diagnosed with Type 1 diabetes is about 10 percent over a five-year period. If there are two or more positive antibodies found during the screening, the risk increases to 50 percent over five years.
Through the study, they have found that they can identify a cohort of people who are at a very high risk or at a very low risk of being diagnosed.
Schatz said the Natural History Study is aimed at screening people at risk for Type 1 diabetes. He said that risk is a 15 fold to 1 and 20 when a relative has been diagnosed with Type 1.
Schatz said they have screened approximately 16,000 individuals a year or roughly 80,000 since the inception of the study.
"We would like to screen more than that," he said. "Our greatest challenge is that we don't have enough people participating."
Schatz said by getting more people to participate, they can understand more about the mechanisms leading to the disease, along with enrolling them into studies that will hopefully prevent and eliminate the disease.
The next screening will take place at the pediatric endocrinology office at 5216 Clayton Court in Fort Myers on Oct. 17 and 22.
Individuals who want to participate in the study can call Khan's office at 239-274-5660 to find out the schedule of the screening.
Khan said they have held between four or five screenings at their office in the last year and a half. He said it all depends on the response from the community of the number of screenings they will hold.
Those who are interested in participating will be brought through the process by a trained phlebotomist and a nurse. Khan said after the individual's blood is drawn it will be sent to the lab at the University of Florida.
"The process shouldn't take too long," he said.
The family will then receive a call back from the University of Florida to tell them whether the antibodies were positive.
"It will predict ahead of time whether the people are at risk for diabetes," Khan said about the study.
Due to the diagnosis, Krissy and her family decided to participate in the TrialNet Natural History Study because she wants a cure to be found.
"There has to be awareness out there, it is an awful disease." she said. "I wouldn't wish this on my worse enemy."
Krissy said she told her 5-year-old daughter Cameron that she can have one poke in the arm done for the study because her sister has to have four shots a day.
"She is going to do it every year," she said about her daughter. Krissy and her husband also will participate in the trial every year.