Type 1 Diabetes: Challenge for Kids and Adults Awaiting a Cure

Photo by: Ryan Morrill Lyndsey Clarke

Every time I whispered in Santa’s ear,

Spoke to the Easter Bunny,

Blew out birthday candles,

And wished upon a star,

I always asked for the same thing:

A cure for diabetes.

— Lyndsey Clarke, 10

Loving someone with type 1 diabetes comes with a certain amount of responsibility. It means learning how to recognize the signs of dips and spikes in blood sugar and to react accordingly. It means knowing how to perform a blood test and to understand the resulting reading. It means keeping a supply of glucose-raising foods on hand. At some point, it might even mean needing to administer a life-saving injection of glucagon or insulin.

Debbie Clarke of Manahawkin takes the responsibility so seriously, in fact, that her daughter Lyndsey’s diagnosis at 10 months of age prompted her to take early retirement in order to see to Lyndsey’s care full time.

Type 1, or insulin-dependent, diabetes affects 8.3 percent of Americans, or 25.8 million children and adults, according to 2011 data from the American Diabetes Association. The disease results from a malfunction of the pancreas, the organ that normally makes and secretes three crucial peptide (digestion-related) hormones – insulin, amylin and glucagons – into the bloodstream for glycemic control. Insulin lowers blood sugar, metabolizing carbohydrates and fats into usable energy. Amylin slows the rate at which glucose enters the bloodstream. Glucagon raises blood sugar.

Insulin is naturally produced by beta cells in the pancreas, in response to levels of glucose in the bloodstream. However, the pancreas of a person with type 1 diabetes lacks beta cells because the body’s immune cells attack and destroy them. Therefore, the body does not produce insulin at all, so synthetic insulin must be injected daily and with meals.

Hypoglycemia is caused by low blood sugar (below 70 milligrams per deciliter). Symptoms can include trembling, rapid heartbeat and a cold sweat; irritability, stubbornness, impatience and anger; dizziness, weakness and fatigue; confusion, lack of coordination or otherwise impaired mental state; and, eventually, unconsciousness.

Hyperglycemia is caused by high blood sugar. Symptoms can include a sweet taste in the mouth, lethargy, behavioral and mood changes, excessive thirst and frequent urination.

Both, if untended, can quickly become life-threatening emergencies.

This past spring, researchers at Harvard University’s Stem Cell Institute discovered a hormone they named betatrophin that stimulates beta cell growth in diabetic lab mice, but human testing may still be five years away.

While the root cause is genetic, the onset long believed to be triggered by a virus, recent science suggests wheat gluten may be a contributing trigger and that a gluten-free diet may aid in diabetes management. Meanwhile, medical scientists continue to work toward an artificial pancreas to improve upon, and relieve the burden of, conventional insulin therapy, by way of mechanical, bioengineering and gene therapy approaches.

Socially, myths about diabetes surrounding nutrition and lifestyle are all too common. Many people assume sugary foods are “off-limits” or confuse type 1 with type 2, which is caused by genetics and lifestyle factors, including excessive caloric consumption (specifically sugar-sweetened beverages) and being overweight. With proper glycemic control and health management, a person with type 1 diabetes can live a full, normal, healthy life, despite a shorter-than-average life expectancy (by five to eight years), and an increased risk of heart disease and stroke. Other complications include damage to such major organs as eyes and kidneys and can impair blood vessels and nerve function.

Type 1 was previously known as juvenile diabetes because it is commonly diagnosed in children and young adults. But juvenile diabetes is now considered a misnomer since the diagnosis can be made at any age. In fact, 85 percent of Americans with type 1 diabetes today are adults, according to the organization formerly known as the Juvenile Diabetes Research Foundation, now JDRF as it undergoes a rebranding journey on its path toward finding a cure.

Understanding the word “juvenile” was no longer an accurate descriptor and wanting to communicate its commitment to all ages and all stages of the disease, the organization announced in November 2011 that it had dropped the formal name Juvenile Diabetes Research Foundation from its identity, after 40 years as a leader in research funding and advocacy, and would henceforth be known simply as JDRF to better reflect its all-inclusive mission to help improve the lives of everyone with type 1 diabetes and to work toward a diabetes-free world. At the same time it launched its new logo with the graphic element T1D to emphasize and reenergize its focus.

One Brave Girl,

One Tireless Mission

Lyndsey Clarke is now 10, just starting fifth grade at Stafford Intermediate School. At the Aug. 6 meeting of the Stafford Township Council, Mayor John Spodofora presented Lyndsey with an official proclamation in recognition of her bravery and activism, and to congratulate her on selection as a delegate in JDRF’s 2013 Children’s Congress, a pilgrimage to Washington, D.C., to appeal to Congress for renewed federal research funding. As a former colleague of Debbie Clarke at the Naval Air Base in Lakehurst, Spodofora has known Lyndsey all her life. The mayor described her as “a wonderful young lady who continues to fight these battles, not just for herself, but also for others.”

Lyndsey and her family have participated in the annual JDRF Walk to Cure Diabetes, held each fall on the Seaside Heights boardwalk, since before Lyndsey could walk – her first year, she rode along in a stroller. Her Team “Lyndsey Lion-Heart” has grown considerably in number through the years, some years including as many as 100 supporters.

Throughout the year, the Clarkes’ activism takes the form of raising awareness and promoting understanding through conversation and fundraising events, and representing the type 1 community.

Important to note about Lyndsey is, while type 1 plays a major role in her daily life, it does not solely define her. She has a wide range of interests, including dance – ballet, jazz, tap, hip-hop and lyrical styles – at the Broadway Bound Dance Academy in Manahawkin (since age 3); horseback riding lessons at Argo Farm in Forked River; and a preoccupation with the Titanic (the ship and the movie). On the shelf above her desk in her prettily decorated bedroom, intermingled with all her JDRF awards, her hobbies are on display: her ribbons for equestrian competitions and certificates of academic achievement.

“I love school,” she said. In addition to type 1 diabetes, Lyndsey has a “Type A” personality, according to her mom. “I try to tell her to relax.”

To manage her diabetes, Lyndsey wears a continuous glucose monitoring system, or CGMS, called Dexcom. They call it “Dexi” for short. The CGMS corresponds with a sensor she wears on her belly, which works with a cannula inserted under the skin, and a tiny needle that checks the blood glucose level in the tissue. Dexi can tell her what her blood sugar is doing, rising or dropping, and how quickly, with a line that slants either gently or sharply. She also wears an insulin pump, or omni-pod, on her arm or the back of her hip, to deliver units of insulin as needed. The two machines do not communicate and act automatically, however. She must administer the insulin accordingly. She has to regularly relocate the pump because eventually the buildup of scar tissue under the skin reduces absorption of the insulin.

“She’s so cool – she doesn’t have an ounce of self-pity,” Debbie raved. “As for Mom, on the other hand, I’m not always so sure,” she added with a self-conscious laugh.

Before the diagnosis, the initial concerns for Debbie and John, Lyndsey’s dad, began with Lyndsey’s weight loss, accompanied by excessive thirst and too many wet diapers. At first, doctors chalked it up to a growth spurt. By the time the correct diagnosis came, at Community Medical Center in Toms River, Lyndsey’s blood sugar reading was 560 – the normal range is 70 to 120 – and she entered a diabetic coma. She spent her first Thanksgiving in the hospital, and the Clarkes’ lives changed forever.

As Debbie recalled, her initial reaction to the diagnosis was one of anger. But she soon found “the adrenaline kicked in,” and she mustered the strength to do what needed to be done. Lyndsey’s grandparents moved closer to be involved in her wellness. John is in construction, and works as hard as he can to cover the huge out-of-pocket expense of medical supplies. Insurance hassles have become a way of life.

Lyndsey’s insulin was delivered by manual injection until she was about 6, when she got the CGMS, and the convenience of the automatic system has been a blessing. For one thing, the CGMS gives her the peace of mind to be able to concentrate in school without constantly wondering how she feels, Debbie explained. Her new pump, which she got within the last year, is 40 percent smaller than the previous one.

Still, careful consideration must be given to everything Lyndsey eats, and to her physical activity. She sees her endocrinologist every three months to check her A1Cs, which provide a historic snapshot of her average blood sugars to give a general sense of overall management success. A Salter scale is a handy tool the family can use before meals to weigh foods and show their precise carbohydrate content.

But Lyndsey has chosen to turn hardship into opportunity, by embracing activism and spreading a message of hope. She also looks for every opportunity to find humor in tough situations and to have a good laugh. Learning to relax is another important coping mechanism, her mom added.

“I think diabetes makes you grow up a little quicker,” Lyndsey said. She has had to cope with disappointment when low or high blood sugars have compromised holidays (think Halloween candy) and caused her to miss out on activities, especially weekend activities, such as birthday parties or church.

Sometimes, she said, she has even wondered if God was punishing her.

Having type 1 diabetes makes her feel as if she stands out from her peers, and not always in a good way. It can become tiresome – the food restrictions, the ways in which much of life revolves around the numbers, the bulky equipment, visible through her dance costume, the physical symptoms she may feel when her levels change, such as dizziness and weakness when low, and fatigue, thirst and headaches when high.

As a side note, not everyone with type 1 diabetes chooses to use a CGMS and automated pump, preferring manual injections and blood tests to the feeling of being “hooked up” all the time and having to deal with equipment maintenance.

For Lyndsey, being a part of the type 1 community has helped her feel less alone. Celebrities such as Nick Jonas serve as role models for success.

Both she and her mom are grateful for the people in their lives who are familiar and comfortable with the routines. “With a lot of these people, I can forget I have diabetes,” Lyndsey said. Even Daisy May, the family’s Jack Russell terrier, goes along with the program. She is sensitive to changes in Lyndsey’s blood sugar and will make a racket in the middle of the night if necessary. “She can sense it because I get restless,” Lyndsey said.

Argos Farm sponsors Lyndsey in her walk each year and provides the team T-shirts. Farm owner Angela Martin remarked on Lyndsey’s passion and commitment to the horses, her ever-present smile, excitement and an eagerness to learn. Lyndsey’s trainer, Anjelicastarr Furno, described Lyndsey as “a wonderful student, a great rider and a sweet, brave girl.”

To support Team Lyndsey Lion-Heart in the 2013 Walk for a Cure on Oct. 6, email Debbie at daaclarke1@comcast.net; visit www2.jdrf.org and type Lyndsey’s name in the walker search fields; or send donations (with her team name in the check memo) to: JDRF Central Chapter, 740 Broad Street, Suite #4, Shrewsbury, N.J. 07726.


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