Writing on a Rare Disease

 

BMCC’s English Professor Page Delano

March 8, 2012

In Page Delano’s Writing Intensive 095 class, students develop ideas through narration and description. They shine a light on grammar, sentence structure, word choice and more—illuminating everything under the hood that makes an essay run smoothly.

This matters, of course, but it matters even more when they have something compelling to write about.

A writing unit of rare disease

Professor Delano, who has taught in BMCC’s English department since 2004, knows well the combustive potential of content in a writing class, and recently provided her students with a unit on rare diseases.

Class discussions ranged from the social, to the political, to the scientific. A critical factor in surviving any disease is health care, an issue impacting BMCC students and many New Yorkers on a deeply personal level. Add to that, complications from what the U.S. Department of Health calls a “rare disease”—it affects fewer than 200,000 people—and education, access and resource allocation are even more significant.

And then there’s the biology of the disease, being able to describe how it operates.

“I asked students to be responsible for at least a minimal scientific definition of the diseases they were studying,” Delano said.

To start, they created an inventory of their families’ health issues, and discussed universal health issues such as the importance of eating breakfast.

“In part, I do this for selfish reasons, to have students eat breakfast to be better prepared for class,” Delano says. “But I also think it’s an opening which allows for a look into the scientific aspect—an opening into the sciences of rare disease.”

They also “focused on empathy—how we, in general, respond to people with rare diseases,” she said. “I’ve found over the years that empathy has to be learned, and this project seemed a viable method for expanding our empathy genes.”

In addition, the class addressed research and funding issues.

“How difficult is it to fund research for such diseases?” Delano asked the students. “We noted caretaking strategies, and family stress issues, as well.”

Teaching a unit that hits close to home

During the unit, Delano shared information about her 18-month-old granddaughter, Dylan, who is living with the rare disease, Glycogen Storage Disease (GSD) 1B.

“In this particular disease,” she explains, “the liver lacks the transporter protein that enables the release of glucose into the body over time. As a result, there must be constant absorption of glycogen. There is no cure, but in most cases, GSD1B patients drink a solution of cornstarch on a regular basis. In my granddaughter’s case, this happens through a gastric feeding tube, until she gets older.”

The class also watched the popular feature film, Extraordinary Measures, which centers on a couple’s struggle to find treatment for their two children with Pompe Disease (GSD type II), and brings up many of the rare disease unit’s themes—the politics of drug funding, the science of disease, and how families cope with the illness of a loved one.   

Some students researched GSD, while others prepared presentations on other rare diseases, and Delano guided them on how to respect each other’s privacy, while valuing their classmate's experience.

Interdisciplinary potential

The unit culminated on World Rare Disease Day (always the last day in February; this year, the 29th), when the small study groups made oral and PowerPoint presentations on the illness or condition they had researched together.

The students also wrote individual papers on topics generated in class discussions.

“I am thinking about making this a larger project, drawing together faculty from science, economics, nursing, health education, human services and business, but it made sense to begin on my own,” Delano said.

She envisions a more interdisciplinary project, perhaps next year.

“In my experience,” she said, “the students really appreciate sharing their ideas and work, with students and faculty outside the confines of their individual classrooms; so I think this aim is pedagogically sound.”

In the meantime, Delano’s students—who are majoring in Liberal Arts, Emergency Medical Training, Computer Science, Respiratory Therapy and other subjects—are learning to integrate points of views into a paper, “working to select the necessary information and combine that with a point of view in their writing,” she said.

“You want to have an objective opinion,” one student commented, talking about the paper he’s writing, and another added, “After learning all this, you appreciate what people go through.”

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STORY HIGHLIGHTS
  • English Professor Page Delano brings the topic of rare disease into her writing class
  • A rare disease is one that affects fewer than 200,000 people
  • Students used writing to explore tough issues of health care, empathy and profit, as they relate to human suffering
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