For diabetes educator, work is personal

Anna Simos, who was diagnosed with diabetes at age 15, has devoted her career to the preventing the disease and caring for those who have it.

Ed Gray credits Stanford diabetes educator Anna Simos with developing strategies for managing his diabetes that are tailored to his needs and lifestyle.
Norbert von der Groeben

Anna Simos had always been the healthy one in her family — never a candy eater, she said — but, at 15, she was diagnosed with the traditional family illness: diabetes.

She remembers that day quite clearly. “My grandmother and uncle both had Type 1 diabetes and my father was diagnosed with Type 2, so when I was diagnosed, I knew what it meant for my life moving forward,” she said. “It was sobering, and I knew there was no easy way out. I remember that first day when the doctor brought in a syringe with insulin and told me to give myself a shot. I asked him, ‘How many times will I have to do this? Every day?’ ‘Probably four to six,’ he said. I was not happy.”

Over the intervening 33 years, and through one pancreas and two kidney transplants, Simos, who received much of her medical care at Stanford Health Care, has learned how to balance her diet, lifestyle, medications and essential medical equipment to live a life with Type 1 diabetes. By the time she was a college student, she had begun to think about what she could do to help others with the disease. “I had figured it out for myself, but as I began meeting others with diabetes, I decided I should do something with this on-the-job training,” she said.

In the mid-1990s, she earned master’s degrees in public health and in epidemiology, with a focus on diabetes, so she could start to educate others about the challenges of the disease that had touched her life. She joined Stanford as a certified diabetes educator and diabetes clinical research coordinator in 2000.

'Epidemic levels'

The worldwide statistics on diabetes are staggering. The Centers for Disease Control and Prevention estimates that 387 million adults have a form of diabetes — either Type 1, in which the pancreas does not produce insulin; Type 2, in which the body may both underproduce and resist the effects of insulin; or a Type 2 variant that develops after organ transplantation. About 86 million American adults, more than 1 in 3, are prediabetic. Prediabetes, defined by blood sugar levels that are above normal but not high enough for a Type 2 diagnosis, increases the risk of heart disease, stroke and Type 2 diabetes.

“Diabetes and prediabetes are at epidemic levels,” Simos said. Those numbers drive her efforts. By focusing on education and prevention, Simos hopes she can halt people’s progression to Type 2 diabetes and stave off complications in patients who already have the disease before the worst of its consequences take root. “We want to help prevent the transplant, the amputation and the blindness that can result from poorly managed diabetes — all things we can treat and turn around with the right care,” she said.

She teaches from experience.

On Nov. 13, Simos saw one of her combined personal and professional goals met: Stanford Health Care’s first Diabetes Prevention and Wellness Health Fair. The free, public event brought together 15 nonprofit organizations and vendors, clinicians from Stanford Health Care and Stanford Children’s Health, and other diabetes education experts to provide free risk assessments, updates on diabetes care technology, food demonstrations and nutrition education. Keynote speaker Charlie Kimball — an IndyCar driver who is living with diabetes — talked about how he meets the everyday challenges of the disease. “Everyone’s coming together for the first time,” Simos said shortly before the event. “You’re going to learn something if you come, because it’s not just about diabetes — it’s also about prevention and how you can live a full life with the disease.”

The Diabetes Prevention and Wellness Health Fair allowed Stanford’s diabetes clinicians to share their knowledge, accumulated over decades of caring for patients and bolstered by Stanford Medicine research. In recent years, Stanford scientists have uncovered key molecular pathways for insulin-producing cells and a substance whose buildup in the pancreas is an essential precursor to Type 1 diabetes development.

Walking in her patients’ shoes

Simos has endured many of diabetes’ long-term effects, including vision loss and nerve damage to her hands, feet and stomach. The people she educates about their disease come to know that “she walks in the same shoes,” said one of her patients, Ed Gray. “She teaches from experience.”

Gray, diagnosed with Type 2 diabetes at age 18, is now 49. Over time, he has withstood the disease’s most predictable consequences: a triple coronary bypass, a kidney transplant and blindness. The transplant requires him to take certain medications that make it more difficult to control his blood sugar. When one of his feet became infected and would not heal, as often happens with diabetes, he faced the possibility of amputation. Simos and Gray knew that an insulin pump could better regulate his blood sugar, but Gray’s inability to see made that option challenging. “Anna understood that independence is important to me,” said Gray, who works full-time as a director at a Silicon Valley digital video production software company. “She advocated for me and worked on her own time to discover the combination of devices that would work best for me and my condition.”

With the approval of his Stanford Health Care doctor, clinical associate professor of medicine Marina Basina, MD, Simos trained Gray to operate the devices by touch. “It took lots of patience from all of us,” Simos said. And it worked: Gray’s glucose levels have never been controlled so well. “I feel better than I ever have,” Gray said. Added Simos, “The bonus is that he still has both of his feet.”

This kind of dedicated care is a Simos trademark. “She provides emotional support and close follow-up, which extends beyond regular work hours when needed,” said Basina. “She also can coordinate care between inpatient and outpatient, so patients don’t get lost to continuing care following hospitalization.”

Simos is leading an effort to have Stanford Health Care’s diabetes program certified by the National Credentialing Board of Diabetes Educators. She also serves as a liaison among the internal medicine, endocrinology and transplant programs. “That improved coordination will support the standardized diabetes care at Stanford,” said Basina.

Simos also works with registered dietitians such as Patsy Obayashi, MS, who is dedicated to diabetes care for people who have received a liver, kidney or pancreas transplant. Post-transplant health requires lifelong maintenance in a multitude of areas, from diet and physical activity to infection prevention and stress reduction. Having uncontrolled diabetes — whether triggered by the transplant or pre-existing — threatens not only overall health, but also the transplanted organs. “One of the reasons we started the post-transplant diabetes program is because it wasn’t good enough just to tell people to pay attention to their diabetes and hear them say, ‘Of course,’” Obayashi says. “We wanted to provide them with the needed tools and practical recommendations on how to do that.”

‘People are beautiful puzzles’

Simos understands that even well-conceived tools and practical recommendations cannot be delivered like marching orders. She strives to understand what might work for each of her patients. “You cannot judge a person’s inability to comply with care requirements,” Simos said. “You can’t give up on them. People are beautiful puzzles and, piece by piece, we put them together.”

Take the puzzle of Breanna Sevy, a UC-Berkeley student who wanted to study abroad. Although she had been diagnosed with Type 1 diabetes when she was 4, Sevy had never wanted (or learned) to give herself the insulin shots she needed on a daily basis. For years, she had others do it for her. When she transferred from pediatric diabetes care to the adult program at Stanford Health Care, she became Basina’s patient and Simos’, too. And she was wary of finger-pointing from her clinicians about what she was doing right and wrong when it came to her diabetes care. “Most diabetes doctors will say, ‘You’re doing this wrong, and you’re going to die,’” Sevy said.

Simos started Sevy’s treatment slowly. She recommended Sevy try to use an insulin pump to manage her diabetes, since the device would free her from the need to give herself the daily injections she feared. Even though the insulin pump would eliminate the shots, Sevy would still have to prick her finger for blood samples several times a day. Knowing this was something Sevy also found challenging, Simos asked Sevy to start by trying to do it just once a week. Sevy could handle that, and she worked her way up slowly to three to four pricks a day. This incremental approach brought Sevy to a place where she could manage and control her diabetes and confidently make that study trip to Europe. “Anna is the pivotal reason I am able to go on this trip,” Sevy said.

That’s the kind of success Simos is happy to see. What she also wants — and the Diabetes Prevention and Wellness Health Fair was a first step — is to teach more people about the risks of poorly managed diabetes and to lobby for more diabetes educators wherever health care is available. “We need more people educated about the disease,” she said. “It’s moving so fast. If we can just get people to start thinking about their risk factors, we can take a different approach to diabetes: prevention.” 

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