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[IP] 6th article in the diabetes series (lots on JDRF)
Hidden fear of diabetes: What will future bring?
Sixth of seven parts
By: Betsy Gilliland, Main Line Life Staff December 21, 2000
> The future is a daunting place for anyone. For children with
diabetes, it promises complications their peers have never considered.
These children already know the day-to-day challenges of living with a
Diabetes affects every organ system in the body. It is a leading cause of
kidney failure, adult blindness, nontraumatic amputations, nerve damage,
stroke and heart attack.
Diabetes kills one American every three minutes.
The life expectancy of people with diabetes averages 15 years less than that
of people without the disease.
The death rate among infants born to mothers with diabetes is two to three
times greater than that of infants born to women without diabetes.
When and where - or even if - these complications will strike, these children
do not know. But the possibility always looms over their lives.
"We don't talk too much about the negative things that can happen in the
future," admitted Carol Melman of Haverford, whose 10-year-old son, Aaron,
was diagnosed with diabetes at age 6.
However, she added, she always answers her son's questions about the disease.
Stephanie Harmelin, 18, of Wynnewood has had diabetes for six years.
"Every year it's just one more year of damage being done," noted her father,
Robert "Bobby" Harmelin, president of the Juvenile Diabetes Research
Foundation International (JDRF) Philadelphia chapter.
While Stephanie is aware of the complications, he added, she doesn't dwell on
Gary Scheiner, a certified diabetes educator who teaches 300 children among
his 800 patients to manage the disease at Integrated Diabetes Services in
Wynnewood, emphasizes short-term gains to his young patients.
Effective blood sugar maintenance can improve muscle function, stamina,
flexibility, strength, mental performance, energy levels and moods.
"Most people ... want immediate gratification," he added.
While proper self-management can help prevent long-term complications, he
added, there are no guarantees ... a reality all too evident to most of his
"They think, 'I'm doing all this, and I still might have complications,' "
However, children with diabetes and their families find another aspect of the
disease even more frustrating.
"It's not cured yet," said Renee Bernett of Bala Cynwyd, whose daughter
Melissa, 17, was diagnosed with diabetes in 1992.
Three weeks after Melissa was diagnosed, she participated in her first JDRF
Walk to Cure Diabetes. Family and corporate teams, as well as individuals,
raise pledge dollars for diabetes research in the annual walkathon.
This year Melissa surpassed her goal of raising a cumulative total of
$100,000 since 1992. The Bernett family team, frequently a top family team
nationwide, received a diamond level award from JDRF in November for raising
between $20,000 and $49,999.
The Harmelins raised more money than any family team in the nation one year.
Another time the Harmelin family was 10th in the country.
"Every year I just am so touched by the generosity of everyone we know," said
Stephanie's mother, Randie.
Stephanie hopes to see a cure for diabetes in her lifetime.
"Other advances ... like my pump and different kinds of insulin were found
through research dollars," added Stephanie.
The entire JDRF Philadelphia chapter raised more than $1.5 million this year.
Max lends a hand
When 4-year-old Max Meyers of Villanova, who was diagnosed with diabetes at
age 2, overheard his mother discussing the Walk to Cure Diabetes, he decided
to lend a hand.
Nan Meyers was preparing a letter to send to friends and family members
seeking support, when Max came to her with a sealed envelope.
"Mommy, please hurry up and go to the post office and mail this letter," he
said, "to help me get a cure."
She looked at Max with tears in her eyes.
"There isn't anything I wouldn't trade for a cure," Bobby Harmelin said.
The mission of JDRF, a worldwide nonprofit organization founded in 1970 by
Main Line parents, is to cure diabetes through innovative research.
JDRF focuses on three areas of research: to restore normal blood glucose and
metabolism; to prevent and reverse the complications of diabetes; and to
eliminate diabetes and its recurrence.
The organization turns over 85 cents of every dollar raised to research. In
the fiscal year ending June 2000, JDRF contributed $85 million to diabetes
research projects. The organization has allocated $120 million for research
in fiscal year 2001.
Some Main Liners have become political advocates to petition the government
for diabetes research funding. Bobby Harmelin has made numerous trips to
Washington, D.C., to call on Pennsylvania House of Representatives members.
"Most research in this country is funded through the federal government," she
As Pennsylvania's delegate to the JDRF Children's Congress in Washington,
D.C., from 1999 to 2001, Haverford's Stockton Morris, 11, who was diagnosed
with diabetes at 20 months, was among five U.S. children to testify before a
Senate subcommittee for increased research funding in 1999.
On Dec. 15, Congress increased research funding for Type 1, insulin-dependent
diabetes at the National Institutes of Health. Investment will rise from an
estimated $134 million in fiscal year 2000 to about $220 million in fiscal
year 2001 - an increase of more than 60 percent.
According to JDRF statistics, the average lifetime cost of medical care for a
person diagnosed with diabetes at age 3 is calculated at $600,000 in today's
dollars. Diabetes accounts for more than $100 billion in annual U.S.
health-care costs. One of every five Medicare dollars is spent on diabetes.
These amounts could increase as the incidence of diabetes rises. According to
JDRF figures, more than 120 million people worldwide - better than 2 percent
of the population - have diabetes. The World Health Organization estimates
the number will increase to 300 million by 2025.
A mother's worry
Randie Harmelin worries about the damage diabetes inflicts on her daughter's
body, but physical harm is not her only concern for her daughter's future.
"I'm afraid of how much harder her life will be," she added.
What will happen when Stephanie goes on a job interview? Randie wondered.
Will a company pay her health benefits? Or will an employer just decide to
hire someone else?
"I hope to continue as normal a life as possible," said Stephanie.
For the past two years, Aaron Melman, who also participates in the Walk to
Cure Diabetes, has followed a predictable regimen to manage his condition.
Making few changes to his routine, he has kept his glucose levels under
"Maybe I don't have diabetes anymore," he said hopefully.
In 1999 researchers in Canada successfully transplanted insulin-producing
islet cells in seven adults with Type 1 diabetes. None have required insulin
In August the National Institutes of Health released guidelines enabling the
government to fund stem cell research in which scientists can harvest stem
cells to create insulin-producing islet cells.
Despite these recent breakthroughs, however, children with diabetes must
continue to buy time with insulin therapy - the same treatment used since
"Insulin isn't a cure for diabetes," said Scheiner. "It's a form of
treatment, and it's not that effective a treatment. But it's the best we've
got ... "
o o o
Next week: A family's story.
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