‘It makes you a little proud to be a human’

At first, the symptoms were so subtle he hardly noticed them. Sometimes his foot would catch on the ground as he walked. “I would stumble a little bit,” said Eric Sibley, MD, PhD, professor of pediatric gastroenterology at the School of Medicine , now 59 years old. “Gradually it became more pronounced, until it was an obvious limp.”

But Sibley was a busy man. He was a leader in pediatric gastroenterology, flying to conferences around the world. He was also running a successful science lab at Stanford making landmark discoveries about the molecular underpinnings of the lactase enzyme necessary for digesting milk, and treating children with gastrointestinal ailments at Lucile Packard Children’s Hospital Stanford.

Sibley was married to his college sweetheart — also a physician — and they had two young children. The Harvard College graduate had toiled through more than a dozen years of advanced education, picking up a doctorate and medical degree along the way, and he was reaping the rewards.

It was the early 2000s, and Sibley was among the elite in academic medicine. He was also one of few African Americans on a U.S. medical school faculty. In 2018, African Americans accounted for a mere 3.6% of full-time medical school faculty, according to an Association of American Medical Colleges report.

He didn’t know yet that he would eventually be one of an estimated 2% to 10% of practicing physicians with a disability, according to the American Journal of Physical Medicine & Rehabilitation.

Sibley, who has multiple sclerosis, said the changes developed over many years.

“Initially, my disability was not visible,” Sibley said. “Then my gait got worse. The weakness went from my right leg, then right arm, then left leg. I went from one crutch to two, then a wheelchair. … Now my wheelchair is my desk.”

The decline in mobility was slow. First he lost the ability to walk, then pain in his hands took away his ability to work in the lab. Just last year, when he could no longer hold up his head to look into his patients’ eyes, he was forced to say goodbye to patient care.

A practical man, Sibley rarely pauses to look back at those losses. Instead, he has forged ahead, making accommodations, developing new talents, creating new opportunities and performing at the highest level in his rarified role as a professor of medicine.

Sibley often reflects on African American role models who helped enable his success, and he’s paying it forward by being a mentor to other minorities and a champion of diversity in medicine.

The early years

Sibley grew up in a middle class Los Angeles neighborhood and excelled in school. His father, William Sibley, MD, practiced family medicine in South Los Angeles, not far from the family’s home in the View Park-Baldwin Hills neighborhood.

“View Park-Baldwin Hills was one of the few neighborhoods in the west side of Los Angeles where African American professionals and entertainers could purchase homes with less realty discrimination,” Sibley said.

“We lived across the street from the jazz singer Nancy Wilson. And Ray Charles was two blocks over. Ike and Tina Turner were one block over.”

His mother, Mary Hall Sibley, managed the household, and Sibley and his two younger brothers played sports.

“We all played catch, usually football, outside in the street,” Sibley said. “Once, in the third grade, I was going up for a catch and ran into the hubcap of a parked car. I broke a bone in my knee. I had to be helped up off the street and got a cast. That’s when I first thought, since I really enjoyed sports, I wanted to be an orthopaedic surgeon.”

“I had to be helped up off the street and got a cast. That’s when I first thought, since I really enjoyed sports, I wanted to be an orthopaedic surgeon.”

Eric Sibley, MD, PhD, professor of pediatric gastroenterology

Though he was aware of an undercurrent of racism throughout high school and college years, it was subtle for him. He heard racial slurs and knew he was a part of a minority that faced discrimination. But with his father to help guide him and educational opportunities that helped him excel, a career in medicine never seemed out of reach.

Sibley attended the Harvard School for Boys, an elite private school in North Hollywood, one of four African American students in a class of 120. He went on to Harvard College as a pre-med student.

In his junior year, he served as president of Harvard’s Percy Lavon Julian Science Organization, founded in 1972 to foster enthusiasm and interest in science, math and engineering among Black students.

The late S. Allen Counter, PhD, a professor of neurology at Harvard and the founding faculty adviser of the organization, was a mentor for Sibley, talking with him regularly about his career goals and helping students arrange for prominent African American scientists and physicians to speak to the group.

Sibley also found mentors among Black upperclassmen who told him that “if you’re pre-med, it was a good idea to try to get exposure to research and science,” he said.

Based on that advice, he spent summers working in research laboratories at the National Institutes of Health and completed the research for his honors thesis in the molecular biology lab of Tom Maniatis, PhD, at Harvard.

Sibley met his wife, Carol Somersille, MD, on move-in day at Harvard.

“The funny thing is my mother saw her and said, ‘Oh make sure you meet her. She looks like a nice girl,’” Sibley said. His wife laughs at the story, insisting Sibley didn’t tell her about it until 15 years later, after they were already married.

They were both interested in the sciences and active in the Percy Lavon Julian organization.

“Eric was always involved in racial justice issues,” said Somersille, an OB/GYN physician in Mountain View and director of the El Camino Healthcare District Board. “But he worked on the academic side of things. He tried to get people of color the opportunities that other people had.”

After three years at Harvard, Sibley graduated in 1982 with honors and enrolled in an MD-PhD program at Johns Hopkins University.

He was drawn to Johns Hopkins, in part, for the chance to interact with another African American role model, cardiothoracic surgeon Levi Watkins Jr., MD, the first Black student to attend Vanderbilt Medical School and the first surgeon to successfully implant an automatic heart defibrillator in a human patient.

At Johns Hopkins, Sibley began to develop his research interests in gastrointestinal physiology — his doctoral thesis in biochemistry focused on insulin receptor gene regulation. He also discovered his love for pediatrics during medical school rotations.

“Eric was always involved in racial justice issues. But he worked on the academic side of things. He tried to get people of color the opportunities that other people had.”

Carol Somersille, Eric Sibley’s wife and an OB/GYN physician in MountainView

“I’d be on call in the pediatric ward at nights. They had a little basketball play room,” Sibley said. “Being that I was still a kid at heart, I so admired how, despite being sick, these children could still be so resilient.”

Instead of pursuing his original goal of becoming an orthopaedic surgeon, his next step was a pediatric residency at Harbor-UCLA Medical Center. In 1994, a year after residency, he and Somersille were married.

Sibley started his career at Stanford in 1993 as a postdoctoral fellow in pediatric gastroenterology in the lab of Garry Gray, MD, a professor of gastroenterology who was investigating lactase, the enzyme responsible for the digestion of the milk sugar lactose, and how that enzyme may be regulated differentially during maturation. Gray’s group was just beginning to explore regulation of the lactase gene.

“I was interested in understanding if the lactase enzyme activity decreased in mammals as they weaned,” Sibley said. “That decline happens in humans but not those of Northern European descent so they can tolerate milk. African Americans are among those groups who have lactase deficiency, and it causes symptoms. I guess it was on my radar for that reason.”

Initially, grants from the Robert Wood Johnson Foundation’s Minority Medical Faculty Development Program enabled Sibley to dedicate 70% of his time to research.

That increased to 75% after he received a career development award from the National Institutes of Health followed by multiple independent investigator R01 awards, which supported his research for the next 20 years. Among other findings, Sibley’s laboratory was the first to show how a specific DNA polymorphism that had been linked to lactase played a key role in keeping the enzyme active in some adult mammals.

His lab continued to make discoveries and publish papers with Sibley at the helm even after MS began to slow him down.

Career interrupted

It started in 1999, after a round of golf aggravated what Sibley thought was an old softball injury in his shoulder. When the pain didn’t go away, he saw a doctor. An MRI didn’t show much in his shoulder, but looking toward Sibley’s spine, the doctor noticed demyelinating lesions — evidence that the protective covering, called myelin, around his nerve fibers was damaged.

It wasn’t enough for a diagnosis of multiple sclerosis — a brain and spinal cord disease in which the immune system attacks the myelin wrapping of nerve cells — but it was suspicious.

Sibley’s official diagnosis didn’t come until many years later: severe primary progressive multiple sclerosis, the most aggressive form of the disease. His illness would lead to a worsening neurologic function — with primary symptoms of pain and weakness of the extremities — but it was unclear how quickly this might occur and what type of losses he would face.

“All those things were lining up, and if I had been able to continue at that pace healthwise, I was on a trajectory to continue as a leader in my field.”

The adjustment to becoming a patient was challenging. “Until I developed MS, I was thinking, ‘OK, I’m going to be able to do everything,’” Sibley said. “It was a big psychological evolution to be able to accept that, yeah, there are going to be limitations on what I can do and how people are going to perceive me. The first real hurdle was using a crutch at all.”

Before his diagnosis, Sibley’s career gained remarkable momentum. He was appointed to assistant professor in 1999 and three years later won his first NIH R01 grant. He became editor-in-chief of the Journal of Pediatric Gastroenterology in 2005 and in 2006 he was promoted to tenured associate professor.

In 2010, his achievements in academic medicine were recognized by induction into the American Clinical and Climatological Association.

“All those things were lining up, and if I had been able to continue at that pace healthwise, I was on a trajectory to continue as a leader in my field,” Sibley said. “So that became a bit of a frustration, to have everything lining up perfectly, but then have the realization that I can’t keep traveling to national leadership meetings. It’s just too hard on the body.”

By 2011, he was using a wheelchair and his condition was common knowledge.

“I noticed he was limping a little … then one day he came to my office and told me about his diagnosis,” said Dorsey Bass, MD, associate professor of pediatric gastroenterology. “It just blew me away. I couldn’t believe this was happening.”

“The dominant theme of Eric’s practice is caring about the people who need it most, Eric’s loyalty to them and their loyalty to him just always, well — it makes you a little proud to be a human.”

Dorsey Bass, MD, associate professor of pediatric gastroenterology

Bass, who shared a Friday afternoon clinic with Sibley for two decades, witnessed Sibley, a quiet, compassionate man, provide care to the sickest of children, many with chronic disabilities. Sibley maintained his practice, his compassion for his patients only growing as his own disability increased.

“The dominant theme of Eric’s practice is caring about the people who need it most,” Bass said. Some of Sibley’s patients, he said, were “very financially distressed and with multiple disabilities, kids with cerebral palsy and lots of complicated, difficult issues.”

“Eric’s loyalty to them and their loyalty to him just always, well — it makes you a little proud to be a human,” Bass said.

“It was just completely inspiring how he could barely walk down the hall, and still be doing rounds and seeing outpatients, and never complaining. … Maybe the most remarkable thing is: It didn’t really seem to change who Eric was,” Bass said. “He addressed his disability, like, ‘OK, how are we going to work around this? How can I keep going?’”

Changing the pace

Today Sibley’s life is very different than it once was. It takes him two to three hours to get ready each morning. Simply getting out of bed is a daily challenge. He is more dependent on his wife and his two children — Carl Somersille Sibley and Lauren Somersille Sibley, both grown now — for support. Carl is now a Harvard graduate himself and Lauren is headed to Stanford.

Sibley eventually hired aides when he needed more help. He has seen doctors, physical therapists and occupational therapists regularly, and uses rituximab, an anti-inflammatory medication, to slow the progression of his disease.

Over the years, he missed important conferences and lost job opportunities. He missed his kids’ performances and the presentation of awards at school. Gates were often closed to him, both literally and figuratively: Handicapped access denied. He grieved for each loss, but then he moved on.

“It’s been tough,” Somersille said. “He’d get frustrated. There have been times when he became too weak to drive and had to pull over. Our children have had to step up and make sacrifices.” She said he gave up many things, but one thing he never gave up on was coaching. Sibley remembers, with fondness, many years of coaching his kids’ basketball teams, but it wasn’t always easy.

“There’s a videotape of where I’m coaching on the sidelines, and I have a limp,” Sibley said. “At one point I was on the court and, because of the limp, I sort of tripped over myself and fell down. But I continued to coach even with two crutches.”

Perhaps it was the skills he developed coaching that spurred an interest in mentoring others. In 2011, the same year Sibley began using a wheelchair, he was appointed one of the four academic advising deans who together mentor between 110 and 120 students each. The role suited him, said Neil Gesundheit, MD, professor of endocrinology and senior associate dean for medical education.

“The thing about Eric is he is a very gentle person. There’s a natural kindness to him. He has the ability to understand student issues and not be judgmental.”

Neil Gesundheit, MD, professor of endocrinology and senior associate dean for medical education

“The thing about Eric is he is a very gentle person,” Gesundheit said. “There’s a natural kindness to him. He has the ability to understand student issues and not be judgmental. Some of the students who struggle the most in med school are from backgrounds without family members who have worked in medicine — people from different racial and ethnic backgrounds who haven’t had any role models. Eric’s been there for them, a quiet champion of diversity.”

Sibley found he could be the most helpful with the most vulnerable students — those with physical or mental health challenges: “That’s one area where my own health issues have made it a little bit easier for students to approach me for the support they need.”

In October 2016, while transferring from his bed to his wheelchair, Sibley fell and broke his leg. “Turns out I have osteoporosis from sitting instead of using my bones,” he said.

The bone had to be set with a titanium rod that ran the length of his right femur. During his rehabilitation, Mary Leonard, MD, professor and chair of pediatrics, called him to discuss two new departmental roles she hoped he would take: the inaugural associate chair for academic affairs, and liaison to the Office of Faculty Diversity and Development involved with faculty appointments and promotions.

These responsibilities fit him perfectly, and he threw himself into his work as adviser to young faculty and postdoctoral fellows. In promoting diversity in the department, he has led a push for systemic recruitment efforts to ensure inclusion of minorities and other underrepresented groups.

“Eric has challenged all of us to create a more inclusive and diverse culture in each component of our academic mission,” Leonard said.

“At his suggestion, we’ve implemented term limits for our most important committees to create opportunities for the next generation of leaders, and we’ve brought a new level of rigor to our searches to identify diverse candidates. It’s much more structured now. He helps me identify potential candidates and I contact those people to encourage them to apply.”

Mentoring the next generation

When she was new to Stanford’s faculty, Aida Habtezion, MD, associate professor of gastroenterology and hepatology, was interested in applying for the Robert Wood Johnson Foundation’s Minority Medical Faculty Development Program, just as Sibley had done.

“It’s nice when you find people who resemble you in many ways — as an African American, a scientist and specifically a gastroenterologist — and who have been successful in the field that you are just starting. It gives you hope,” said Habtezion who is on leave from Stanford to serve as Pfizer’s chief medical officer. It provides invaluable encouragement, she said, and helps identify opportunities to pursue.

“Eric was a very important mentor who could guide me and give me advice, because he walked that path before me,” she said.

In 2018, his 25th year at Stanford, Sibley reached a long-awaited benchmark, a promotion to full tenured professor.

For Sibley, prevailing through adversity had a lot to do with people who cleared the way ahead of him and with knowing that he could do the same.

“There were times later in my career when there was no one like me in a role ahead of me, there having been no prior record of an African American physician promoted to full professor in the university tenure line, no one Black or similarly disabled to advise or mentor me,” he said.

“So it was important to me to be that role model, to be a person students and colleagues with similar challenges could look to for guidance and encouragement.”