Continuity of Care

In past generations, when babies were born with hearts that didn’t form properly— with leaky or narrow valves, holes in the wall between the chambers, or muscle abnormalities—parents were not offered much hope.

Even if the child survived, it was expected that they would have an abbreviated, curtailed life.

Today, for the first time, there are more adults than children living with congenital heart defects (CHDs). They are going to college, having children themselves, and becoming scientists and researchers and musicians and teachers (see p. 18).

That’s why medical homes like Emory’s Adult Congenital Heart Center—the only one in the state and one of the largest in the country—are important. They provide a continuity of care vital for patients with lifelong conditions like CHD.

A simple saliva test can help you plan for a healthy family.

Based out of Emory University, the JScreen program offers affordable, at-home genetic testing 24/7 across the U.S.

EDITORIAL ADVISORY BOARD

Chair Ray Dingledine, PhD, Professor and Chair of Pharmacology, Emory School of Medicine

Charles Craig, Consultant and former President, Georgia Bio

Robert Goddard III, Chair and CEO, Goddard Investment

Lucky Jain, MD, Professor of Pediatrics, Emory

Claire Perdue James, philanthropist

Michael M.E. Johns Exec VP for Health Affairs, Emory

Jeff Koplan, MD, MPH, VP, Global Health, Emory

Kimberly Manning MD, Associate Professor of Medicine, Emory Margery McKay, VP, Health Sciences Development

Paul Pendergrass, Independent Communications Consultant

Julie Ralston, Director of Communications, Atlanta Regional Commission

Walker Ray, MD, Retired pediatrician, former president of the Emory Alumni Association

Bill Todd, Exec Director for Health Care Initiatives, College of Management, Georgia Institute of Technology

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Emory Medicine is published three times a year for School of Medicine alumni, faculty, and staff, as well as patients, donors, neighbors, and other friends of Emory Medicine. Produced by the Woodruff Health Sciences Center Communications Office, the magazine is made possible by support from the medical school dean and the Robert W. Woodruff Health Sciences Center Fund. © Emory University

Please send correspondence to Emory Medicine 1762 Clifton Road, Suite 1000, Atlanta, GA 30322; call 404-727-0161 or email mary.loftus@emory.edu.

Christian Larsen Dean, Emory School of Medicine President, Emory Healthcare Physicians Group

Emory’s center follows more than 3,000 CHD patients, with about 2,000 patient visits and 100 heart surgeries yearly. Multidisciplinary teams include adult and pediatric cardiologists, congenital cardiac surgeons, electrophysiologists, interventional cardiologists, nurse practitioners, nurses, social workers, and echocardiographers. The center also provides genetic counseling and partners with our ob/gyn staff to provide high-risk pregnancy counseling and management.

“As these children grow into adults, they need ongoing specialty cardiac care,” says center director and cardiologist Wendy Book. “Yet this high-risk group often experiences lapses in care because of the perception that they are ‘fixed’ or because they aren’t experiencing symptoms. CHDs are so closely associated with infancy and childhood that people often think the conditions just don’t affect adults.”

We are also helping to provide continuous care and support for adults with another disease once thought to be a death sentence—HIV Now, people who are HIV-positive are routinely living long enough to become senior citizens, grandparents, and retirees (see p. 25).

At the Ponce de Leon Center, part of the Grady Health System, Emory doctors and researchers, under the direction of Wendy Armstrong, serve more than 5,200 people in the greater Atlanta area with HIV/AIDS. Many of the center’s patients volunteer to participate in research because they want to give back, Armstrong says. Patients have told her: “I was planning my death. I never expected to be able to plan my life.” A growing number of these patients are older than 50. The Atlanta VA Medical Center is also experiencing this “graying of an epidemic”—of its 1,600 HIVpositive patients, the median age is 52.

The medical and research communities have done a great job of keeping patients with these conditions alive. Now we need to keep them active and healthy so they can make the most of their additional hard-won years.

It’s not what you think...

This cross section of a five-day-old mouse’s spinal cord highlights developing inhibitory neurons, which control movement, in red and green. Vibrant microscopic images such as this, which won the Best Image contest at the Emory Postdoctoral Research Symposium, help researchers find out more about metabolic processes and molecular interactions, advancing knowledge that can save lives.

(Emory

New And Noteworthy

On Our Radar 4

4 People are talking 5 Adults with autism practice life skills 5 | Sleep 101 5 | Emory Pediatric Urban Health Program’s schoolbased clinics 6 | Emory to lead Ebola Training Center 7 | Stand up! 8 High-tech heart help 8 | Heart scan can predict premature death 8 You have the power to prevent heart disease 9 | Secondary comforts 10 | Easing phantom limb pain 10 HIV’s long tail 11 | You Be the Doctor: The Case of the Waxing Moon Face

Features

Hiding in Plain Sight 12

Dr. Ian Crozier survived Ebola after 40 days of intensive care in Emory’s Serious Communicable Diseases Unit.

Months later, after very nearly taking his life, Ebola tried to steal his sight.

Balancing Act 18

For the first time, there are more adults than children living with congenital heart defects (CHDs), and they’re leading full, active lives. But this doesn’t mean they’re cured.

Down Syndrome and Congenital Heart Defects 21

Aging with HIV 25

About half of adults with HIV are now 50 and older. They’re retiring, becoming grandparents, and developing age-related diseases— things they never thought they’d live long enough to experience.

And More

Investing in Discovery 30 30 | Windows of Opportunity 31 Gifts of Note

From the Executive VP 31 Wright Caughman weighs in from the Woodruff Health Sciences Center

Last Word: The First Link 32 Why a television medical reporter volunteered to be a kidney donor.

By Beth Galvin (above with surgeon Nicole Turgeon).

“I sit here, alive first of all, and looking through two eyes, which is absolutely remarkable for me personally, but there are 10,000 to 15,000 Ebola survivors in West Africa who are grappling with these types of ailments as well.”

I am a quadrilateral amputee. In 2008, I contracted a Group A strep infection of the blood that caused toxic shock syndrome and necessitated the amputation of my hands below the elbow and my feet below the knee. Becoming independent has been my goal, just as Aimee Copeland expressed in Emory Medicine magazine (Spring 2015). I first learned to feed myself with body-powered prosthetics. I flipped many a forkful of food on the floor, but with practice I have learned to eat at restaurants. I have learned to walk unaided and try to get in my 10,000 steps each day (I’m a bit obsessed by the Fitbit). I love Aimee’s idea of planning an outdoor area accessible to all. My husband and I have visited several national parks and have found them surprisingly accessible. Like Aimee and her physical therapist, I also love my “torturer,” my personal trainer. I protest but I know it’s good for me.

Cheryl Douglass

Chevy Chase, Md.

My husband, Donald Page, is a 1983 graduate of the School of Medicine and also did six years of post-grad training through Emory, which is why we receive your great publication: Emory Medicine. The article in your Spring 2015 issue about Aimee Copeland moved me. Aimee’s life taught me so much about stepping up and choosing to be brave.

Joan Walker Page Marietta, Ga.

My husband, George Wallace, had to get two polyps removed after a colonoscopy, and they later proved to be cancerous. Dr. Patrick Sullivan did TAMIS (transanal minimally invasive surgery) on him. We both feel it saved his life. We spent one night at Emory Midtown, and the nursing staff and everyone else was just wonderful. The experience was with a culture I had not been exposed to in other hospitals with other doctors. I felt like Dr. Sullivan was treating us like he would treat someone in his own family. My husband is an artist and gave him one of his paintings in return. More people should be aware of this fairly new procedure, and that it can save a lot of pain and recovery time.

Sandy Wallace Conyers, Ga.

My wife was recently receiving four weeks of intense physical therapy for Parkinson’s at the Emory Rehab Hospital under the direction of Dr. Stewart Factor. I picked up a copy of Emory Medicine and, as a former health care administrator, I found the articles very intellectually stimulating. Our son is enrolled in the Emory School of Nursing and is completing his MSN in the Family Practice NP Program. Emory has been a wonderful experience for my wife, our son, and myself (I experienced a top-notch neurological workup there several years ago.)

Bernie Gaydos Roswell, Ga.

We like to hear from you. Send us your comments, questions, suggestions, and castigations. Address correspondence to Emory Medicine magazine, 1762 Clifton Road, Suite 1000, Atlanta, GA 30322; call 404-727-0161; or email mary.loftus@emory.edu.