Date February 7, 2024
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Art exhibition at Brown’s Warren Alpert Medical School puts faces to names of rare diseases

Portraits of children living with rare diseases remind medical students, faculty, staff and medical school visitors to look at patients beyond their diagnoses.

PROVIDENCE, R.I. [Brown University] — A green-eyed girl in a flower crown. Two young brothers dressed as Batman and Spider-Man. A self-possessed pre-teen in a leather jacket.

These painted figures, compassionately rendered in oil, acrylic and watercolor, greet visitors to Brown University’s Warren Alpert Medical School, where they are part of a display of portraits of children with rare diseases.

The exhibition, called “Beyond the Diagnosis,” includes 17 portraits of kids ranging in age from infancy to adolescence. Each child is representative of a rare disease — a disorder, disease or condition that affects less than 200,000 people in the United States. The placards accompanying the paintings note the names of the subject, the artist and the disease.

Those clinical terms — such as Lesch-Nyhan syndrome, Jansen type metaphyseal chondrodysplasia, and 2q23.1 microdeletion syndrome — are often unpronounceable and unfamiliar to most non-medical professionals. Physicians-in-training, on the other hand, likely see the conditions as quiz questions, prompting them to rattle off diagnostic criteria and symptoms.

The goal of the exhibit is to change the way all viewers see rare diseases so that they associate the medical terms with real people. This reflects a core tenet of medical education at Brown, said Assistant Dean of Biomedical Communications Kris Cambra.

"At the Warren Alpert Medical School, we have embraced humanism in medicine since our founding,” said Cambra, who is chair of the medical school’s art committee. “We teach our medical students that every interaction should be patient-centered, and to see that patient as a whole person, not just as their disease. That's exactly what ‘Beyond the Diagnosis’ asks its viewers to do: to see the individual and all their hopes and dreams and beauty, not just the rare disease they have. It's a perfect fit for our art program."

To bring the exhibit to the school for Rare Disease Month in February, Cambra and second-year medical student Elyse Sauber collaborated with Beyond the Diagnosis, a nonprofit that unites art and science to raise awareness of rare diseases and inspire research and treatments for children with these conditions.

The organization matches families of kids with rare diseases with professional artists who use a range of artistic styles to create portraits. In some of the paintings, the child is seated in a classical pose, while in others, they are surrounded by flowers or abstract designs and patterns; some are close-ups, while others are set in landscapes. Most were created from reference photos and conversations with family members. All are pulsing with life.

One of the largest works in the show is “Meghan,” a portrait by Jota Leal of a girl with Hutchinson-Gilford progeria syndrome, an extremely rare, progressive genetic disorder that causes children to age rapidly, starting in their first two years of life. Meghan shows visible symptoms of her disorder, such as hair loss and thin skin, but what’s most striking are her bright blue eyes and her quietly proud smile.

The first thing that viewers may notice about the picture of Kalen and Kyan, young brothers with the motor neuron disease spinal muscular atrophy, won’t have anything to do with their muscles or movement. It will be how engaged and emotive they are. In the portrait of the boys by artist Ian Gaudreau, Kalen closes his eyes, hugs his arms around his body and tilts his head back in contentment while Kyan leans forward, erupting into giggles.

Beyond the Diagnosis
The painting "Hannah" by Susan Bennett depicts a young girl with incontinentia pigmenti as well as diplegic cerebral palsy and epilepsy.

This is the medical school’s second partnership with Beyond the Diagnosis: In 2015, Brown was the first venue to host the organization’s artwork. Since then, the nonprofit has expanded its collection from 17 portraits to 150 and has 98 participating artists from all over the world. The portraits now travel regularly to medical schools, hospitals and conferences, said Founder and CEO Patricia Weltin.

Weltin, who is the mother of two children with the connective tissue disorder Ehlers-Danlos syndrome, recently calculated that since the first show at the Warren Alpert Medical School, more than 12 million people have been reached by the art.

“We want our kids to be seen,” Weltin said. “We’re so grateful to Brown and to Kris for just saying this is a good idea, and we are beyond thrilled to be back at Brown.”

Personal connections to the portraits

One of the paintings on the wall at the medical school depicts a confident boy with a lush head of hair and a broad smile. This is Truman, Cambra’s son, who, the placard next to the painting notes, has the rare genetic condition of Williams syndrome.

Another portrait, of a grinning, pink-clad girl clutching a stuffed animal, is the favorite of exhibit organizer Elyse Sauber. She doesn’t know Hannah, but Sauber feels a strong connection to her.

“There's something about how colorful and vibrant that painting is that reminds me of myself as a child and makes me think of all the happy parts of being a little kid,” Sauber said. “It emphasizes that these children are, first and foremost, children. They are not just their diseases.”

As a baby, Sauber was diagnosed with Marfan syndrome, an inherited disorder that affects connective tissue and impacts the heart, eyes, blood vessels and skeleton. In high school, Sauber was inspired by her experience as well her deepening knowledge of rare diseases to pursue medicine.

Sauber concentrated in biology as a Brown undergraduate, and participated in research on high-risk pregnancies of women with Marfan syndrome with Melissa Russo, an assistant professor of obstetrics and gynecology. After graduation, Sauber continued to research Marfan syndrome, working with a team at New York University on biochemical research projects.

She knew she wanted to return to Brown for medical school.

“I’d found such amazing mentorship at Brown, and I really wanted to come back here to study medicine,” Sauber said.

In her first year of medical school, Sauber needed to take time off to have retinal detachment surgery related to her condition. That changed how she viewed her disease, she said.

“I'd never really been through something serious like that where I was removed from normal life for several months,” she said.

During her recovery, she found that she wanted to do something to increase awareness and understanding of life with rare diseases — for her fellow medical students, she said, as well as for herself.  She’d heard about the original “Beyond the Diagnosis” exhibit at Brown and connected with Cambra and Weltin to bring the arwork back.

The portraits are ideally situated, Sauber said, since the people who will see them the most are first- and second-year medical students who don’t yet tend to patients.

“I think having the portraits arranged in a line from the door of the medical school to the large lecture hall is such an incredible way to bring a face to what people are studying,” Sauber said. “The disease processes, the physiology, the genetics — all of that is important. But at the end of the day, we're in medical school to treat people.”

On a recent weekday, a group of medical students walked by the portraits. “These kids are so cute!” exclaimed one, before heading into class. 

The exhibit is open to the public on weekdays from 8:30 a.m. until 5 p.m.