Kids, parents living with Type 1 diabetes find hope, support at first East End seminar

Kayla, 15, was only 15 months old when she was diagnosed with Type 1 diabetes. Standing before a crowded room of children and adults at Peconic Bay Medical Center in Riverhead Saturday — who turned out in force despite snow and icy roads for the first-ever East End seminar held in conjunction with the Juvenile Diabetes Research Foundation — Kayla told her story.

Tears streaming down her face, Kayla, who volunteers at her local JDRF office and mentors younger kids, said the past few months have been “kind of hard. Having juvenile diabetes has been a blessing and a curse. I’ve met so many great people who have helped me. But it’s hard because my numbers are so crazy right now. I can’t get them under control.”

Type 1 diabetes, or TID, formerly known as juvenile diabetes, is a disease marked by the inability of the pancreas to produce insulin, the hormone that is necessary for converting sugar and other starches into energy. Less than 10 percent of those with diabetes have Type 1.

At Saturday’s kick-off event — PBMC and JDRF plan to hold a monthly event to bring together families grappling with TID, who’ve had no local, East End support network until now — topics discussed included research in T1D, kids and T1D, living with T1D, and networking. Representatives from various diabetes management companies were also  with products to display.

The event was planned to “educate, encourage, and empower families and individuals affected by Type 1 diabetes”, according to organizers.

“We’re so excited to partner with PBMC,” said Betsy Paffmann, outreach manager of JDRF’s Long Island chapter. “We have resources and tools to help you live better with T1D. While we are focused on finding a cure, and preventing this disease, we also want to help you to live, and JDRF has all programs to support you.”

Paffman, whose child was diagnosed at six with T1D, said now, at 26, her son is thriving due to all the research and strides made by JDRF. “We want you to do well with this disease, because you can,” she said.

The event coupled information on cutting edge research with straight-from-the heart stories of living with T1D.

Bob Parant, representing JDRF, spoke about living with Type 1 diabetes for 42 years. He was first diagnosed in the early 70s when he trying out for a college sport.

“I call that the Dark Ages, which it was, as far as diabetes was concerned. I had to pee on test strips and determine how much insulin to give myself. I was just guessing at a number in the air and hoping for the best.”

Also, in those early days, Parant said diabetics often lived alone with their concerns. “In college, no one spoke about diabetes. No one in my family had diabetes.”

The experience, he said, has had a positive side. “I believe that diabetes has made me a better person. I’ve become more educated in nutrition, exercise, in how my body works. I’ve become the CEO of my own body.”

Today, Parant said, support groups exist through JDRF. “There are a lot of avenues to get help.”

JDRF, he said, is an “organization position to help promote research of Type 1 diabetes,” the number one non-profit research organization seeking a cure. “One passionate person, and one passionate family, can make a difference,” he said. The hope, he said, is to “find a cure in my lifetime. We won’t stop until we find a cure.”

Parant said 60 percent of funds raised by JDRF goes to finding a cure, 30 percent to better treatment, and 10 percent to prevention.

Looking forward, Parant discussed key strides and therapies.

The artificial pancreas, he said, is “here today. We’re moving by leaps and bounds,” he said.

According to the JDRF website, in 2006, JDRF launched the Artificial Pancreas Project (APP) to “accelerate the development of a commercially-viable artificial pancreas as a system to ultimately mimic the biological function of the pancreas for patients with type 1 diabetes.”

The artificial pancreas is a device that would be inserted under the skin, monitor insulin and determine when it’s necessary to shut off or give increased insulin.

Currently, people with type 1 diabetes must manually measure levels of glucose in their blood by either using the traditional method of pricking a finger, or by using a continuous glucose monitor, CGM, a device that senses glucose levels via a needle inserted under the skin. Then, based on these measurements, they must adjust glucose levels by taking multiple injections of insulin daily or by continually infusing insulin with a pump via needles placed under the skin.

“By automating detection of blood sugar levels and delivery of insulin in response to those levels, an artificial pancreas has the potential to transform the lives of people with type 1 diabetes,” the site explains.

A six-step APP “development pathway” outlines the JDRF’s APP strategic funding plan and defines the priorities of product research and development. Each step in the plan represents incremental advances in automation beginning with devices that shut off insulin delivery to prevent episodes of low blood sugar and progressing ultimately to a fully automated “closed loop” system that maintains blood glucose at a target level without the need to bolus for meals or adjust for exercise.

Next, Parant said, “coming down the pike” is smart insulin, “a form of insulin that circulates in the bloodstream and turns on when it’s needed to lower blood sugars and off when blood sugars are at safe levels”, according to the JDRF.

Meanwhile, restoration, he said, is a biological cure for T1D, and involves saving and growing new beta cells, especially in early diagnosis, to restore the body’s norma beta cell function. Two areas of therapy are being explored, cell survival and cell regeneration.

“But restoring the body’s ability to create new beta cells while simultaneously preventing recurrence of the deadly autoimmune attack is the greatest challenge yet,” the JDRF site states.

All of the new treatments are in early sages, with “lots of money still needed to be raised to continue,” Parant said, adding that once the research has been developed, the next stop involves getting the FDA and federal government onboard.

Speaking of his own journey, Parant said 42 years of living with the disease has made him “better and healthier. This is a disease we can live with and manage.”

Seeing parents of newly diagnosed children, Parant said, “We need to get out and help them, help you to deal with this. We’re here to try to help you.”

Next, pediatrician Dr. Robert Rubin then explained the illness and said diabetes is a “lifelong condition that deals with high levels of sugar in the blood. Beta cells, he said, are responsible for making insulin” and in diabetics, have been compromised, leading to high blood sugar and complications including kidney problems, blindness, strokes, nerve damage, heart disease, foot problems and infection.

When blood sugar levels are too high, ketoacidosis can develop, and if not treated, can cause diabetics to fall into a coma. Symptoms of ketoacidosis include fruity breath, shortness of breath, nausea and vomiting and a very dry mouth. Other symptoms of diabetes include the need to urinate frequently, extreme thirst and hunger, and weight loss.

The key, Rubin said, is to diagnose diabetes before ketoacidosis occurs, not always easy because screening for diabetes is not common for young children.

Rubin then described the various types of insulin and pumps used to treat diabetes, as well as the importance of counting carbs. New apps on iPhones make carb counting and overall diabetes management easier than ever, he said.

“You need to  discuss with your doctor what’s right for you and what will work for you,” Rubin said, adding, “It takes a village.”

Kids with T1D, on the whole, need to see a primary doctor, pediatric endocrinologist, ophthalmologist, nutritionist, nephrologist, podiatrist, cardiologist, and sometimes, a therapist, he said.

On the East End, there are few pediatric endocrinologists, Rubin added.

The goal, he said, is for teens and adolescents to learn how to manage their diabetes independently. Support groups for teens are available through JDRF and online, he said. “Get kids involved early and often,” he said. “Supervision is essential.” Diabetes affects the whole family and when a family member is diagnosed, “Everyone in the house has diabetes,” he said.

Eventually, he said, kids will be able to check their own blood sugars and manage their injections or pumps. Self-maintenance, he said, “is the key to a child’s independence and self-esteem. You must get your child involved as soon as he or she is able to self manage these tasks.”

Kids stood up to tell their stories. Andrew, 13, was diagnosed in 2007 when he was taken out of his kindergarten class. “I didn’t know what was going on. It was hard on my parents.” Now, he said, he’s able to check his own blood sugar. “My mom asks, ‘What’s the number,’ and that’s pretty much it.”

Andrew said he shatters the misconception that kids with diabetes can’t do or eat what they want. “I do what I want. I can eat anything. I eat everything. Just ask my mom.” Andrew said he’s able to participate in all school trips and will go to music camp next summer, something he’s able to do because he’s now able to manage his diabetes care solo.

Jillian, diagnosed at 7, is now 16. “At first, my dad explained I’d have to prick my fingers. I hated shots. I said, ‘Are you kidding? It’s going to hurt.’ I put Band Aids on every finger and I looked like an idiot. Now I have  a pump, and it’s given me a lot more freedom.”

Jillian said as a child, sleepovers were a challenge. “My dad would come because I didn’t know how to give myself shots. Now it’s much easier.”

Today, Jillian said, she manages her own regime and can go to dance class and eat pizza like other kids. Her friends at school know when her blood sugar is too high or low and take her to the nurse. “It’s been a long time, since I was seven. Hopefully they will find a cure for it and I can overcome this.”

Next, colorectal surgeon Brett Ruffo described honestly and openly his own experience with T1D. He was diagnosed while on a break from medical school in Dominica.

“You have two choices. You fight or you run,” he said.

Ruffo chose to fight.

“I went back to Dominica with 9000 test strips and bottles of insulin, trying to make sure they didn’t break.”

But he acknowledged that he was faced with challenges.

“When I was younger, in my residency, I didn’t want anyone to know,” he said. “Was it just my insecurity, or would it have negatively impacted my future? I made a choice not to be as vocal and I got my fellowship. Was it because I hid my diabetes?”

Looking back , Ruffo said if he had been able to talk about his diabetes, his overall health might have been better.  “We all know the complications,” he said, adding that he was sharing his story now so that younger people, including his own niece, would not have to live in fear of diabetes.

“I’m trying to make diabetes part of my life, not my whole life,” he said. “Most important, I want people to understand that I go through all the things that you and your kids go through.”

Ruffo said he’s most afraid of hypoglycemia, a blood sugar drop so low it could prove deadly. “I’ve been in that severe situation, I’ve woken up with an ambulance at my house. I’m not trying to make people afraid, but we have to find a way to run with it and keep yourselves as healthy as possible. What you can and can’t do in life doesn’t change because you have diabetes.”

Awareness, education and emerging research, he said, “is exciting. I’d like diabetes to be gone.”