One Step Away

Type 1 diabetes can strike anyone at any age,
but JDRF Walk may help fund a cure.

Article as written by Rhoda Baker
from tulsa-kids.com

There were warning signs. It can be a surprise to many adults that type 1 diabetes, which has been called “juvenile diabetes,” actually can affect them as well as children. Although it is more likely to emerge in children, adults can get type 1 diabetes, too. In fact, Dr. David H. Jelley, MD, a Tulsa pediatric endocrinologist, said, “You can get juvenile diabetes when you're fifty.”

When Silvey was diagnosed, about 15 years ago, her parents actively pursued the diagnosis, but four years ago, Taylor's pediatrician did not need convincing.

“It is exceptionally rare in today's world for kids to die because they haven't been recognized by a parent or by a pediatrician and diagnosed quickly,” said Dr. Jelley. “Only about 1 in 4 with new onset diabetes needs to be hospitalized. And in my practice,” he said, “only one of the 3,000 [patients] I've seen died.”


Ironically, Dr. Jelley's son Ben was diagnosed with type 1 diabetes when he was 4 years old. “I'd already been doing this [pediatric endocrinology] for about 12 years when he was diagnosed,” said Dr. Jelley. “It was pretty traumatic. My wife and I noticed he had to go to the bathroom a lot. I tested his blood sugar and it was 300 and it shouldn't have been above 120.”

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Adjusting to Ben's disease was not as difficult for the Jelley family as it might be for others. Both David and his wife are physicians and have always had a healthy family lifestyle. “We never miss a meal,” said Dr. Jelley. “We made good food choices and Ben was good with all the poking you have to do. We just had to become tighter in the timing of meals. And you become a little compulsive and hyper-vigilant during mealtime.”

Looking into the future, all of the families are hoping for a cure for type 1 diabetes sooner rather than later, and that is exactly what the Juvenile Diabetes Research Foundation (JDRF) is all about. JDRF is an international, 35-year-old organization whose mission is to fund intensive research that will find a cure for type 1 diabetes. But, while they search for a cure, their research is finding ways to restore normal blood sugar levels; avoid and reverse diabetes-related complications; and prevent diabetes and its recurrence.

To Donate to TAYLOR’S TROOPERS go to their website www.taylorstroopers.com

In 2005 over $98 million was raised worldwide for diabetes research and research education through JDRF’s Walk program. Locally, over 1,200 Tulsans “Walk(ed) for the Cure” and together they raised $296,000 for diabetes research in 2005. Since its inception, JDRF has provided $900 million for diabetes research worldwide – more than any other nonprofit, non-governmental agency in the world. In a typical year, 85 cents of each dollar goes directly to fund research and education about research.

For More Information:

Telephone JDRF (918) 481-5807 or Email tulsa@jdrf.org

Tulsa Green Country Chapterof the Juvenile Diabetes

“It's completely different now than when I began,” he said. “There used to be two shots a day and very strict meal plans, but there was relatively poor blood sugar control. Today, the majority is on insulin pumps or other kinds of intense insulin regimens and there is a great deal of freedom in eating and lifestyle, while at the same time being able to maintain very good blood sugar control.”

Dr. Jelley had high praise for this organization. “JDRF is very driven for a cure,” he said. “They use a results-based business model. Yes, they do fundraising and fund research, but if they see that research is not going well, they will withdraw their funding.”

Although they haven't yet reached a cure, during the 14 years that Dr. Jelley has been in practice, research has brought substantial changes and advances.

Katherine Silvey remembers the differences when she was a child. “I would go to a birthday party and they would scrape off all the frosting on my piece of cake,” she said. “I felt like it wasn't fair, almost like I was an outcast. I didn't get to eat what the other kids were eating. Now things are different.” With more research, new information, and better ways to control blood sugar, diabetics can eat more “normally,” but within reason.

Silvey said that, as a child, it was difficult to have to constantly monitor her blood sugar to see if it was “good” or “bad,” leaving her feeling frustrated with the unpredictability of disease.

“Sometimes you do everything right and your blood sugar is still bad,” she said. “That would make me feel like I was a bad person.

Sometimes stress or very small things that you don't even notice can cause changes in blood sugar.” Diane Jones said her family stays involved with JDRF because “it is a very positive focus in a very negative disease. It's nice to concentrate on making a difference.”

Last year, Taylor was one of only 150 delegates out of the entire nation to participate in the JDRF Children's Congress. He was in Washington, DC lobbying legislators for the passage of the recent stem cell research bill. Lobbying is one way that advocates keep legislators aware of the disease, while putting a face on diabetes. Taylor's family, including two sets of parents, three sisters and three brothers, has become “Taylor's Troopers.”

Symptoms of Type 1 Diabetes

Type 1 diabetes often appears suddenly, and signs and symptoms may include:

  • * high levels of sugar in the blood when tested
  • * high levels of sugar in the urine when tested
  • * unusual thirst
  • * frequent urination
  • * extreme hunger but loss of weight
  • * blurred vision
  • * nausea and vomiting
  • * extreme weakness and tiredness
  • * irritability and mood changes

In children, symptoms may be similar to those of having the flu. The symptoms of type 1 diabetes may resemble other conditions or medical problems. Consult your physician for a diagnosis.

 

The Challenge of Childhood
Diabetes: Family Strategies for Raising
a Healthy Child (2006) by Laura
Plunkett with Linda Weltner describes the challenges a family faces when one of the children is diagnosed at age 7 with type 1 diabetes. The book is an honest personal account, offering support and helpful advice to families dealing with diabetes. Other readers will respond to the family’s positive, proactive attitude and willingness to work together to overcome difficulties.

All of them are involved with the JDRF Walk to Cure Diabetes, and each year they raise several thousand dollars to contribute to the total. “People believe insulin is a cure,” Jones said, “Insulin is not a cure. Without a cure, you may manage the disease, but it will never go away. If I said to Taylor, 'You have three wishes. What would you wish?' He would say, 'A cure for diabetes.'”

When she was diagnosed 15 years ago, Silvey remembers doctors promising researchers would find a cure before she became an adult. That hasn't happened yet. Researchers are on the cusp of a cure but, in the meantime, new types of insulin and insulin delivery make eating regimens and life in general a little easier. Nevertheless, that's not enough to give an untroubled childhood back to youngsters who must prick a finger from two to eight times each day for constant blood sugar checks and inject themselves or insert tubing as part of an insulin pump.

Grice and Silvey agree that what is worse than the finger pricks and injections is the loss of freedom type 1 diabetes brings. The job for adults such as Grice and Silvey and for children such as Taylor and his parents is to minimize the risks of complications, hospitalization and possible death. That requires education about nutrition, foods and their relationship to activity levels, from sports or dancing to a walk in the park and its effect on blood sugar levels. They must always remember to keep needed foods and blood sugar testing equipment on hand and regulate meals and meal times to suit their diabetic needs. They must educate others to their needs and to their child's needs. In general, they must give their type 1 diabetes never-ending attention no matter where they are or what they do.

There is a distinct difference between type 1 and type 2 diabetes, but it is important to remember that the difference is not related to the age of the person who gets it. The lines are blurred and, during the last decade, one unfortunate statistic is the rapidly rising rate of diagnoses in children for what used to be called “adult onset diabetes.”

That is now called type 2 diabetes. There have been some increases in the numbers of type 1 diabetes diagnoses as well. Within his practice, which is strictly for juvenile diabetics, Dr. Jelley said he saw 40 to 45 new cases each year when he began his practice, and now sees 90 to 100 new cases each year.

Without a cure, even the best management may not always prevent an unexpected blood sugar drop that can bring on a dangerous hypoglycemic episode or high blood sugar levels with the ever-present threat of eye, kidney or heart damage, complications that statistics show can shorten lives by 15 years for diabetics.

Type 1 diabetes: previously called insulin dependent diabetes mellitus (IDDM) or juvenile-onset diabetes, develops when the body's immune system destroys the pancreatic cells that produce the hormone insulin that regulates blood glucose. To survive, people with type 1 diabetes must have insulin delivered by injection or by pump. Risk factors for type 1 diabetes may be autoimmune, genetic, or environmental. There is no known way to prevent type 1 diabetes. Several clinical trials of methods for prevention are currently in progress or are being planned.

Type 2 diabetes: previously called non-insulin dependent diabetes mellitus (NIDDM) or adult-onset diabetes, usually begins as insulin resistance, a disorder in which the cells do not use insulin properly. As the need for insulin rises, the pancreas gradually loses its ability to produce. Type 2 is associated with older age, obesity, a family history of diabetes, a history of gestational diabetes (a form of glucose intolerance diagnosed in some pregnant women), impaired glucose metabolism, physical inactivity and race/ethnicity. African Americans, Hispanic/Latino Americans, American Indians, and some Asian Americans and Native Hawaiians or other Pacific Islanders are at particularly high risk for type 2 diabetes and its complications. Clinically based reports and regional studies suggest that type 2 diabetes in children and adolescents is being diagnosed more frequently, particularly in American Indians, African Americans, and Hispanic/Latino Americans.

These definitions have been summarized from the NIH website information: http://diabetes.niddk.nih.gov /dm/pubs/statistics