Anna’s Epilepsy & Broadening the Pre-med Path

It’s late in the morning and the usual empty lobby in the Levine Science Research Center is filling with undergraduates and various faculty researchers from around Duke’s campus. Students unfold easels and erect temporary walls of felt and foam to support dozens of posters displaying research from a variety of fields.

It’s the culmination of the Duke University Summer Research Program and hundreds of hours of lab work by students in the Huang Fellows Program and the Duke Undergraduate Research Society. They are coming together to showcase their findings and practice presenting their science to peers and the public.

For many undergrads, this is their first poster and their first poster session. It’s an important milestone in their education and future career in STEM and medicine.

Jordan Richardson works in the Mikati lab at Duke and is part of the 2016 class of Huang Fellows. She’s exploring a condition called alternating hemiplegia of childhood, or AHC – a rare neurological disorder that causes temporarily paralysis in various parts of the body, including the face.

During her early research the team realized one of the drugs they were experimenting with – a main ingredient in Dayquil – had a startlingly small amount of research regarding its toxicity.

“Most of the people who have AHC are children and so there’s not a lot of research on this drug in the developing brain,” explains Jordan.

Seeing a gap in the data, Jordan realized she had found the topic for her summer research project. Now, months later she hangs her poster alongside those of her student colleagues – The Acute and Long Term Toxicity of Dextromethorphan in the Developing Brain.

 

Anna’s Epilepsy

While seemingly random, Jordan’s research actually strikes close to home.

She grew up with a close friend named Anna who suffered from an intellectual disability and severe epilepsy. This relationship profoundly influenced Jordan’s life and continues to make an impact on the Jordan as she prepares for medical school.

In her younger years, Anna’s pediatric neurologist was amazing. But when she transitioned to the adult system, her treatments took a turn for the worst.

Her new doctor, unfamiliar with how to interact with someone suffering from such a severe cognitive impairment, applied a nerve stimulator to control Anna’s seizures. Not seeing the results he wanted, the doctor continued to increase the strength of the stimulator over the course of several weeks.

In the meantime, Anna, who functioned at a 3-year old level, lost her appetite and eventually stopped eating altogether. She lost a dangerous amount of weight and was about to be hospitalized until they realized what was going on.

“It was literally pulsing right here,” says Jordan as she forms her hand into a claw near her throat where the stimulator was inserted and mimics the beating of a heart.

Unlike a normal patient, Anna couldn’t explain how she was feeling and why she couldn’t eat. And unfortunately, the doctor in charge of her care was not properly trained to address the circumstances.

“Like 56% of med school deans say their graduates aren’t prepared to work with people with intellectual developmental disabilities,” quotes Jordan.

At Duke, this experience is spurring her on to educate pre-med students on how to better serve the disabled population and to advocate for disability rights in the medical field.

“It really opened my eyes on a personal level to the problems that exist for people with intellectual developmental disabilities and healthcare.”

Realizing that most people have no training or experience on how to treat patients with disabilities, Jordan set out to incorporate this into her own studies and to spearhead the Special Olympics Health Alliance.

The Special Olympics Health Alliance unites pre-med students in the Triangle and special Olympic athletes in the Durham community to talk about nutrition and health, while helping students gain a better understanding of how to treat future patients like Anna.

Jordan believes participating in programs like this are necessary in order to have an effect at the public health level – a lesson she credits to her experience in the Huang Fellows Program. The fellowship trains students to understand science in the context of and in service to society.

For Jordan, that means expanding her effort beyond just becoming a doctor or scientists. She now incorporates policy, advocacy, and non-profit work into her education.

She encourages other pre-med students and budding researchers to find the issues they truly care about and incorporate these interdisciplinary elements into their own education, rather focusing solely on the lab or the degree.

 

One Year Later

Almost a year after hanging her poster in that lobby, Jordan has been invited to present her findings at the American Academy of Neurology. The annual international conference draws hundreds of neurology experts from around the world.

She looks forward to presenting her work and rubbing shoulders with some of the foremost leaders in her field. There will be sessions focused on epilepsy in the clinic and new findings in Down syndrome research. She hopes to connect with other researchers and explore opportunities to do clinical and advocacy work during a future gap-year.

While these opportunities are welcome and the research into AHC exciting, she eventually comes back to her experience with Anna as the inspiration for her work.

“As a doctor, you are right on the cusp of someone’s humanity,” she says. “You’re right at the intersection of what makes them a person in the functional sense – what makes them alive, what makes them operate, what makes them be able to function in the world. But also what makes them a person.”