Sunday, August 2, 2015

Faces of Diabetes

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Dealt a lousy genetic hand, Kathy Ashenfelter reshuffled the deck by joining a groundbreaking research study. ( David Maialetti / Staff Photographer )
Dealt a lousy genetic hand, Kathy Ashenfelter reshuffled the deck by joining a groundbreaking research study. ( David Maialetti / Staff Photographer )
Dealt a lousy genetic hand, Kathy Ashenfelter reshuffled the deck by joining a groundbreaking research study. ( David Maialetti / Staff Photographer ) Gallery: Faces of Diabetes

William Henry
Exercising through his pain and eating right, he went from using insulin to needing no blood-sugar meds.

In a situation that would seem to call for a piling-on penalty, 73-year-old Henry was diagnosed two years ago with Type 2 diabetes - on top of having severe arthritis and serious heart trouble.

Initially, his doctor prescribed insulin. Now, after dropping 40 pounds, Henry keeps his blood glucose under control without any medicine, thanks to an inspiring commitment to walking and a healthy diet.

"I walk a lot, which is difficult when you have bad legs and knees," he says of his regular jaunts to Society Hill and his favorite spot, the Starbucks at 4th and South. "I get tired. I sit down. I get a cup of coffee and start off again."

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  • Besides the arthritis throughout his body (for which he gets shots in his knees and occasionally takes medication that raises his blood-sugar levels), Henry has undergone a quintuple bypass, a mitral-valve repair, insertion of a pacemaker and an operation to remove scar tissue from one of the other surgeries.

    Yet for the last two years, he has been making the trip every Tuesday from his home in Queen Village to a weekly diabetes self-management class taught by the Diabetes Education Center at Pennsylvania Hospital in Center City.

    "You can always learn something," he says. "Before I had diabetes I was eating anything. Now I read every label that I buy.

    "You hear from others and they hear from you, and it helps them to hear what you went through, how you're doing and where you stand," he says. "It's not just the medical part of going there. You feel after a while that you belong to them. It's like a family. It's wonderful."

    Although he says he's in constant pain from arthritis, Henry hopes to live to be more than 100. "You know, regardless of what pain you have, it's wonderful to get up and still see the sunshine," he says. "I have pain, but I can open my eyes and see the beauty."

    - Darla Synnestvedt


    Sarah and Elizabeth Nicell
    Identical twins and perpetual-motion machines, they don't let diabetes stop them.

    The Nicell girls celebrated their birthday last week. Although being 8 years old is new to them, they're old pros at diabetes management.

    Diagnosed with Type 1 three weeks apart from each other when they were toddlers, they can't remember a time when they didn't count carbs and calculate insulin doses.

    Their fingers are as nimble on the controls of their insulin pumps as any 14-year-old is with her cell phone. Indeed, kids who don't know them usually assume that they're either texting or thumbing through a playlist.

    The insulin pumps clip to their waistbands and feed insulin through a skinny tube - it looks like an earbud wire - into a tiny catheter taped in place under their clothes. "People that I don't know say, 'Is that a phone or an iPod?'" Sarah says, giggling.

    When the twins were first fitted with the pumps just over a year ago at Children's Hospital of Philadelphia, they were frustrated because the tape holding their catheters in place was no match for their activity level and the devices would slip out. The girls play soccer on weekends. On weekdays after school, they practically live on an 8-foot-high jungle gym in their back yard in rural Glassboro, N.J.

    Rather than ask Elizabeth and Sarah to take it easy, the doctors found stronger tape. "They told us, 'Don't make them adjust. We'll adjust to them,'" says their mother, Amy.

    That's pretty much the family motto. Although Amy is vigilant to the point of hanging out in the hallway instead of going home while the girls are at CCD, "we don't like to make them stop doing things," she says.

    A catheter will fall out "every once in a while if they're at a gymnastics party," she says, "But we bring an extra."

    - Becky Batcha


    Scott Soleimanpour
    He has looked at diabetes from three sides now.

    Even though he was just 5 years old, Soleimanpour, now 29, knew something was wrong.

    "I had the most unquenchable thirst you could ever imagine," he says. "Imagine that you were in the desert for weeks without anything to drink and then multiply that by 10. That's how thirsty I was."

    This harrowing episode landed him a diagnosis of Type 1 diabetes complete with a two-week stay in the hospital.

    As an inpatient, he was "the kid that ran around the wards talking to the nurses and checking on the other kids and making friends and saying 'Can I help?'" says Soleimanpour. The seed was planted, and he now divides his time as a diabetes researcher on the cutting edge of science at the University of Pennsylvania and a diabetes doctor for Penn Medicine.

    His research focuses on how pancreatic beta cells behave. The beta cell is responsible for making insulin, and the lab where he works, under lead researcher Doris Stoffers, studies how the cells live, grow and die, and how to make them function more efficiently. The ultimate hope is to cure diabetes by finding a way for dead cells to regenerate.

    "I have my little Star Trek Enterprise banner over there," he says pointing to a corkboard decorated with a small "to boldly go where no one has gone before" banner. Soleimanpour says he's fascinated by "that whole idea of exploring new frontiers, being able to think of new ideas that no one has ever thought about."

    When he's not searching for a cure, Soleimanpour sees adult patients one day a week at the Penn Rodebaugh Diabetes Center. "I love patient care because you have the ability to touch a person and help inspire them," he says.

    Soleimanpour often uses his personal story as motivation in his clinical work. One of his colleagues' patients refused to listen to her doctors about checking her blood-sugar levels and taking insulin. She quickly changed her tune when they put her on Soleimanpour's schedule.

    He remembers walking into her room and the patient exclaiming "Oh, no, I've heard about you! You're the diabetic doctor. So I'm not going to get by with any excuses about not wanting to take insulin with you, am I?" Six months later, she had dropped 40 pounds through diet and exercise and was in control of her diabetes.

    His main message to patients is this: "If you have diabetes, you hold the key," he says. "The more you invest in this disease, the more you are going to get out of it."

    - Darla Synnestvedt


    Shirley Gregory-Johnson
    They say the truth hurts. In her case, avoiding it was worse.

    When Gregory-Johnson, of Germantown, walked into her first diabetes-self- management class in the social hall at St. Luke's Episcopal Church last fall, she was confronting a decade-old problem.

    "I was in denial," she says. "I just did not believe it at all. I did not want to think that I had diabetes. I was ashamed. I didn't want to be sick, and diabetes and sickness to me were synonyms."

    Her doctor had diagnosed her with Type 2 diabetes 10 years earlier, but it took the urging of her priest to get her to attend her first class, run by Albert Einstein Health Care Network. It was there that Gregory-Johnson learned to take her blood-sugar levels for the first time.

    "They had to literally hold my hand for me to give me my first lancet," she recalls. "I just could not conceive of doing this thing that had been requested.

    "I can't stick me," she thought at the time. "I'll hyperventilate."

    Now the procedure has become part of a daily routine that includes taking glyburide and metformin pills twice a day, eating healthier foods and staying active - a commitment that has helped her shed 25 pounds and two dress sizes in just one year.

    "I work on Broad Street," says the 74-year-old Gregory-Johnson. "And I park my car on 12th, which forces me to walk at least the two blocks."

    "The food management - whoa!" she exclaims. " watch everything that goes into your mouth. That's been the struggle, but it's certainly worth it."

    Before seeking help, Gregory-Johnson had a tough time restricting herself. "I'd go past candy seven times a day and eat it seven times a day and think 'It's OK. I'm not hurting myself.'"

    Now, her philosophy is one of moderation. "You can have it sometimes," she says, "but that should not be your diet."

    As a former 49th ward leader and North Philadelphia director for the late U.S. Rep. Thomas Foglietta and the current district director for U.S. Rep. Bob Brady, Gregory-Johnson takes advantage of her visibility in the community to talk to "everyone who will listen" about her personal struggles and triumphs in hopes of encouraging others to get help themselves.

    "It's just that you feel good about doing something that's right," she says. "It took a lot of courage. It changed me."

    - Darla Synnestvedt


    Kathy Ashenfelter
    Dealt a lousy genetic hand, she reshuffled the deck by joining a groundbreaking research study.

    A national study called the Diabetes Prevention Program (DPP) has shown that losing just 7 percent of your body weight, exercising regularly and making healthier food choices can prevent Type 2 diabetes if you're at risk for it.

    The stunner: These lifestyle changes worked even better than metformin, a protective medicine.

    Ashenfelter, who is 63 and lives in Fox Chase, signed on with the DPP study in 1996 at Thomas Jefferson University Hospital, one of 27 medical centers around the country that conducted the research.

    Thirteen years later, she's down 50 pounds from her starting weight and is still diabetes-free - "Praise the Lord!" she says - despite a troubling family history of the disease.

    Both of Ashenfelter's parents died of diabetes complications, and her three siblings developed the illness as well. "I'm the only one in a family of six without diabetes," she says.

    She credits the healthful habits that the DPP study team encouraged. (For a booklet of tips based on the research, call the National Diabetes Education Program at 888-693-6337 and request a copy of "Small Steps, Big Rewards: Your Game Plan to Prevent Diabetes.")

    "I stopped drinking soda," Ashenfelter says. "I don't use butter in cooking or on vegetables. I try to eat fiber, whole-wheat bread, and I try to buy portioned-out packaging. I try to take fruit to work to snack on."

    For exercise, she logs about 14,000 or 15,000 steps a day on her pedometer - an effort that's being celebrated among the success stories in an upcoming book called Walk Off the Weight from Prevention magazine.

    "Walking is my saving grace," she says. "I don't drive. I'm too impatient to take buses. I walk. I walk. I walk."

    - Becky Batcha

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