TYPE 1 DIABETES MEANS CONSTANT VIGILENCE
For type 1 diabetics, ignorance is deadly
Photo gallery: Type 1 Diabetes |
By Dan Nakaso
Advertiser Staff Writer
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KAPOLEI — Leanna Chew, a math teacher at Island Pacific Academy, could not prick her finger hard enough to draw blood. So after three unsuccessful attempts, little 10-year-old Ella Axelrod finally stuck Chew the same way that Ella jabs herself 10 times a day to test her blood glucose levels.
Ella, a sixth-grader at Island Pacific, moved up to middle school this year and last month was the star attraction at a two-hour briefing for the entire middle school faculty and staff on the maintenance and dangers of her type 1 diabetes.
"It gave me an appreciation for what she has to go through," said Chew, 30. "I had anxiety and was afraid to do it. But it's our responsibility to handle any kind of situation. I'm surprised that this is not part of required training for every educator."
People with type 1 diabetes are often frustrated by the lack of information and awareness for their particular disease, which used to be incorrectly known as juvenile diabetes. It affects an estimated 5,000 to 10,000 people in the Islands — roughly 5 to 10 percent of those with diabetes in Hawai'i — but can hit adults as easily as newborns.
Unlike people with the much more common type 2 diabetes, those with type 1 do not produce their own insulin and failure to manage their glucose levels or insulin treatments can quickly lead to lethargy, coma and potentially death.
Many of them wear artificial pumps that send pre-measured dosages of insulin into their abdomens through a tube.
"It's the next best thing we could do to buying Ella a pancreas," her mother, Bernie Axelrod, told the Island Pacific Academy staff.
And she explained why so many people with diabetes learn of their disease when they suddenly start losing weight:
"Your body cannot process the sugar from food for energy," Axelrod said, "so it turns to the next best thing: Body fat."
TYPE 1 VS. TYPE 2
With so many people afflicted with type 2 diabetes in Hawai'i, people don't realize the dangerous differences between type 1 and type 2 patients, said Lori McCarney, president of the Hawai'i chapter of the Juvenile Diabetes Research Foundation.
McCarney's son, Geoffrey Cox, was diagnosed with type 1 when he was 20 months old and now, at age 13, also wears an insulin pump.
"People look at him and say, 'Big deal. My auntie has diabetes and we try to get her to lose weight,' " McCarney said. " 'Can't you just eat differently and you'll be fine?' Or, 'Maybe you should lose weight so you can control this? What's wrong with you?' I have to differentiate and say, 'In my son's situation, the wrong decision during the day could be the difference between life and death.' "
The frustrations of type 1 sufferers came to a boil during the 2005 legislative session over a bill that would allow public school staff to inject life-saving glucagon into type 1 students whose glucose levels drop so low that they fall into hypoglycemia.
Glucagon is a hormone that releases sugar stored in the body's liver and is the only thing that can save the life of someone with type 1 suffering a severe hypoglycemic episode, said Leo Garcia, a former Army corpsman and father of a child with type 1 diabetes. Garcia testified on behalf of the bill.
Opponents worried about exposing Department of Education staff to lawsuits, even though Hawai'i has a "Good Samaritan law" that protects people who intervene in a life-or-death emergency.
"We had to tell them, 'Hey, you're not going to be sued,' " Garcia said. "But this bill reiterates the fact that the Good Samaritan law is in place. I attribute it to lack of information among the legislative body."
Gov. Linda Lingle later signed the bill into law.
FAMILIES AFFECTED
Garcia knows how an entire family's life changes with a diagnosis of type 1 diabetes.
His daughter, Natasha, was 6 when she was diagnosed seven years ago.
"You get scared," Leo said. "It gets really, really, really scary."
Suddenly, Leo, Natasha's mother, Sandra Dubrett, and Natasha had to become chemists, nutritionists, physiologists and mathematicians from morning to night in order to keep track of Natasha's calories, exercise and blood sugar and insulin levels.
Now Leo works for the Hawai'i chapter of the Juvenile Diabetes Research Foundation and visits families that have just been told that someone they love has type 1 diabetes.
He often meets them in hospitals and brings along a backpack he calls "A Bag of Hope."
It's filled with a blood glucose meter, supplies, lots of information — including diabetes-related comic books for kids — and a stuffed teddy bear named Rufus, who has patches on his body to show children where they should inject themselves.
"At that point of diagnosis, they're all so shell-shocked," Garcia said. "We want them to know they're not alone."
Natasha is now 13 and an eighth-grader at Highlands Intermediate School in Pearl City, where she deals with teen-age issues such as body image, cliques and fashion — on top of taking care of her type 1 diabetes with her insulin pump.
"Having the pump is OK and it's the thing that keeps me alive," Natasha said. "But I don't enjoy it. Sometimes I can kind of get self conscious. I wonder what people might really think of me. I wonder if they'll tease, although none of that stuff has really happened."
Natasha has only told her three best friends about the pump that hangs off of her belt or clips unobtrusively to her clothes.
"I don't want the whole school to know," she said. "I'm afraid of what might happen. Will they call me names? Will they think I'm weird?"
She performs hula and Tahitian dance and really wants to play volleyball, "but it seems like too much to handle. Sometimes I get really self-conscious."
"To me, for a teenager my age, it's too hard to manage at this age," she said. "I want to do so many things. I want so much freedom."
A CHANGE FOR THE BETTER
Tom Wellman, the chief financial officer of The Gas Co., was 41 when he started suffering horrible stomach pains, couldn't eat or drink and underwent a sudden weight loss of nearly 50 pounds.
"My pancreas was just going berserk," he said. "It was overproducing digestive enzymes and I wasn't able to eat."
He spent several weeks at The Queen's Medical Center where doctors considered ulcers, gall stones, kidney problems and "lots of different things," Wellman said.
But when Wellman got the final diagnosis "it was overwhelming."
He had been a board member of the Hawai'i chapter of the American Diabetes Association and had grown up watching his grandfather boil insulin needles to sterilize them. His parents, mother-in-law and nephew are all type 2 and his sister is type 1.
"When the diabetic educator came in, she said, 'Tom, I'm going to teach you how to take care of yourself.' I said, 'I can't do this. I can't give myself shots.' She said, 'You're going to have to.' My whole life turned upside down. I have this disease that's essentially incurable."
Wellman considered what might lie ahead.
"I knew about amputation and blindness," he said. "But I didn't go negative. I turned in the other direction: I'm going to do everything I can to live with diabetes, rather than wait for diabetes to cause complications."
He joined support groups. He told co-workers to watch him for signs of lethargy and, if they spotted them, to try to feed him something sweet to get his blood sugar levels back up. He told them to call 911 if they ever found him slumped over or unresponsive.
Wellman, who loves sweets, dropped his sugar intake to almost nothing.
"No sugars, no cookies," he said. "I cut way down on pastas and rice. No Zip Packs. That was horrible. To make those lifestyle changes, especially when you're 40 years old, is huge. It was probably the hardest thing I've ever had to do."
Now, at the age of 50, Wellman believes that diabetes saved his life.
"I'm probably healthier now than ever in my life," he said. "I was a Triple A personality with a high-stress job, high-stress life, living off of lots of sugar and lots of executive lunches. Everything just came to a screeching halt overnight. I had to pick up the pieces and put them back together in another way. Now my diet and exercise are so much more in balance. If this hadn't happened, I probably would have been well on my way to something far worse."
ATHLETES AREN'T IMMUNE
Unlike Wellman, former University of Hawai'i punter and field-goal kicker Eric Hannum knew little about diabetes and nothing about type 1 until 2004.
Hannum, at 6 feet 2 and 185 pounds, has always been active but suddenly starting losing weight — about 15 pounds over a two-week period — while constantly being thirsty.
"I'm a very, very active person — always doing stuff like playing beach volleyball and working out," Hannum said. "I was feeling lethargic. For about a week, I felt like it was hot and muggy and I was drinking Gatorade like crazy. Why is that? By the second week, I knew that something's probably wrong."
At age 26, Hannum got the news from one of his best friends — a doctor, of whom Hannum later learned has type 2 diabetes.
"It was a day I'll never forget," said Hannum, now 30. "I didn't know what it was or what it meant. But it definitely turned out to be a life-changing event. He said I was probably two or three days away from being hospitalized. He said, 'It's going to be part of your life forever.' I was not educated about diabetes at all. I didn't know what insulin was. Now I know that type 1 is an autoimmune disease in which the body attacks itself and destroys its insulin cells. It wasn't because I was eating bad."
Hannum dived into treating his disease and looked at the daily barrage of numbers he had to calculate each day — like calories and carbohydrates and glucose levels — as if they were personal field goal records that needed to be smashed.
"I had to know everything about it before actually tackling it," Hannum said. "Learning how carbs affect your body, learning how sugar affects your body, learning that when you go to Starbucks and have a frappuccino you need so much insulin to offset all that sugar."
THE FEAR OF INJECTIONS
Like others with diabetes, one of the biggest fears initially was injecting himself several times a day.
"The first time I did it it was tougher than kicking a 50-yard field goal in front of 50,000 people," Hannum said. "I knew I would be giving myself upwards of 1,500 shots per year so it was something I had to do."
Hannum remains a competitive athlete and found inspiration in the half-dozen professional athletes who perform at peak levels while dealing with their own diabetes.
But he can never get complacent.
Last month, he was camping with friends at Ka'ena Point when his glucose level — which should ideally be around 100 milligrams per deciliter — suddenly dropped to 46 milligrams per deciliter.
"I instantly broke out into a sweat and became disoriented," Hannum said. "Basically your body is shutting down because it doesn't have enough fuel. My buddies saw me and knew I needed Gatorade. Ten or 15 minutes later I was fine, but it can definitely scare the heck out of you."
Hannum has gone through about 50 similar episodes in the four years that he's been dealing with diabetes. It's never pleasant.
"Your heart feels like it's beating out of your chest and you can't think straight and you're instantly sweating," he said. "Even after your blood sugar goes back up, it kind of takes the wind out of you for half an hour or so because your body was starting to go into shock."
Hannum has dedicated himself to learning everything he can about type 1 diabetes and how sugar, carbohydrates and exercise affect him.
"If you have tenacity and guts, it's not going to control you," Hannum said.
But he can never forget that he has to be vigilant about taking care of his diabetes.
"Now," Hannum said, "it's the first thing I think about when I wake up and it's the last thing I think about before I go to bed."
A PROMISE OF SUPPORT
At Island Pacific Academy, teachers and faculty were stunned by how little they knew about diabetes.
They learned how food and insulin can affect the attention spans of students with diabetes — and how puberty can contribute to throw off their body chemistry.
"Ella will not be the only child you will have in your class with type 1 diabetes," her mother told the group.
Principal Jennifer Sagiao assured Ella that Pacific Academy's faculty and staff will be watching out for her.
"All of us," Sagiao told Ella, "will be hyperprotective of you."
Reach Dan Nakaso at dnakaso@honoluluadvertiser.com.