Diabetes, Deconstructed

Patient Guide to Diabetes offers easy-to-understand advice for those living with the disease and their caregivers

The more Amy Rohrbaugh, MS (Edu ’98), learned about diabetes ― the disease that would contribute to the death of her mother, Frances “Frannie” Scebor ― the more frustrated she grew.

Many Type 2 diabetes patients, even those with cardiovascular complications like Frannie’s, can live full and productive lives, yet they lack the knowledge and tools to be active managers of the disease. Providing better access to that crucial information is the core mission of The Frannie Foundation, which Rohrbaugh and her husband, Troy, A&S ’92, founded in her mother’s honor in 2010. And that mission inspired The Frannie Foundation to make a $185,000 gift to support Rita Kalyani, MD (Med ’03), MHS (SPH ’09), an associate professor of medicine in the School of Medicine, and development of the Johns Hopkins Patient Guide to Diabetes, which launched this year.

The web-based Patient Guide is a comprehensive, evidence-based, expert-reviewed resource that diabetes patients and their caregivers can turn to for information on more than 50 broad topics, ranging from living a healthy life with diabetes to treatments and complications.

“As clinicians, we don’t always have enough time to share with our patients all the information that we would like them to know,” says Kalyani, who served as the editor-in-chief of the Patient Guide. “This website provides information based on the latest evidence that we’d want to tell our own patients during a clinic visit.”
Rohrbaugh says her mother ― like many diabetes patients ― knew the standard advice for living with the disease: see the doctor every six months, diet, and exercise.

“But for some people, like my mom, exercise isn’t easy,” Rohrbaugh says. “She also had peripheral arterial disease and could only walk about 10 or 20 feet without pain. She needed other avenues and options to manage her disease. She just didn’t know what those options were, and this website would have really helped.”

Kalyani led a team of several Hopkins experts in designing and developing the site, including Michael Quartuccio, MD, Samantha Ottone, Tom Mitchell, and Jennifer Fairman, MA (Med ’99). Fairman, an assistant professor in the Department of Art as Applied to Medicine, designed all of the Patient Guide’s graphic elements. Other important features include the website’s signature glossary system, which includes more than 500 terms. Those words appear in blue throughout the website’s text, and hovering over them brings up its definition in a pop-up box. Definitions are written in easy-to-understand language, not difficult or frightening medical jargon.

The Frannie Foundation played a role in many stages of the website, Kalyani says, particularly regarding the topics the website would address.

“Amy’s taken it on as her personal mission to raise awareness of what her mom went through while living with diabetes, and that energy has influenced this project,” Kalyani says. “Every person on our team was invested in that vision, which has made this such a rewarding process.”

Rohrbaugh recalls tearing up on the train back to her home in New York earlier this year after seeing the full Patient Guide demonstrated for the first time at Hopkins. She thought not only of her mother, but also the many people the Patient Guide will help in the future.

“My mom’s story is sadly familiar to millions of people affected by this combination of disease states, but now the Patient Guide to Diabetes website can give them many resources and tools they need to work successfully with their medical team,” Rohrbaugh says. “For The Frannie Foundation to make this kind of achievement in partnership with Dr. Kalyani and her team, after only six years of active service as a charity, is incredibly gratifying.”