Once an Advocate, Always an Advocate

EB patient Shane DiGiovanna Defies Odds, Attends College and Fights for the Rights of Students with Special Needs and Chronic Conditions

Shane has been a patient at Cincinnati Children’s Epidermolysis Bullosa (EB) Center for most of his life. We first introduced you to Shane when he was 12. Now 20, Shane is a student at Rice University in Houston, where he is studying economics and advocating for students with special needs and disabilities. He’s determined to make sure his skin condition doesn’t deter him or his dreams of working for NASA. EB presents a lot to overcome.

Shane stays busy. Classes, homework and hanging out with friends are all part of the daily routine, but for EB patients there's more to do. Lots more.

For instance, it takes several hours in the morning and evening with a nurse just to complete the time-consuming bandaging process and changing clothes. Showering requires even more time.

“I need the nurse to do basically everything when it comes to the bandages and putting on clothes and that stuff. Once that is done, then I can be independent for the day and go to classes,” said Shane.

Schedule-wise, he tries to ensure all his classes are in the late morning or early afternoon to allow for his bandaging process. Friends and occasionally a transcriber from the disability office help with note-taking.

Assistive technology devices help him throughout the day, including a mobility scooter and an iPad for writing and other classwork (teachers send exams and quizzes as PDFs, which he completes and emails back). 

“I would not be able to do any of what I’m doing with classes or anything if iPads did not exist,” he said. “It’s very hard for me to type on a regular computer, but iPads are wonderful. They are the key to everything. Technology is a very powerful tool for accessibility.”

Finding His Advocacy Voice

Shane sees advocacy as a powerful tool and something he feels compelled to do. From physical appearances alone, it’s easy for people to notice Shane’s fragile skin and cochlear implants. But after talking to him for a few minutes, his personality and desire to make the world better for others quickly becomes apparent.

As a long-time advocate for fellow patients at Cincinnati Children’s, Shane served on our Patient Advisory Council for seven years. Comprised of people between the ages of 12 and 21, the council gives patients, their siblings, and former patients a voice in the decisions that affect their care.

“It really helped me to get a voice and learn how to be an advocate and how to be the voice for other people,” Shane said. “We learned how to negotiate. We talked and we worked in different ways to make things better.”

Shane cites the creation of the Pet Center, where patients can have their pets brought in for visits, as one of the most rewarding accomplishments during his time on the council.

Still Fighting For Others

While visiting college campuses, Shane and his mother, Patsy, noticed a disheartening, recurring theme: most schools are not accessible for students with disabilities and mobility issues. Rice was one of the few colleges that was.

“I can get from place to place relatively easy, but that’s not to say it’s completely accessible, and that’s why I’m doing a lot of advocacy for disabled students here at Rice,” said Shane. Older buildings can be a problem.

“I actually had to drop my Physics major because it was in a building that I could not access,” he added.

Despite switching to an Economics major, Shane still dreams of working for NASA. In the meantime, he’s working with the student government to push new legislation and serves as co-chair of the Students with Disabilities Advisory Council.

“We’re talking more than just physical disabilities. I really pushed hard to make it inclusive for patients with learning disabilities, as well,” said Shane.

Summer Internship at Cincinnati Children's

Improving the lives of fellow classmates isn’t Shane’s only goal. He’s also focused on helping Cincinnati Children’s patients with chronic conditions as they make the transition into the working world.

Returning to Cincinnati Children’s this summer for a business internship, Shane’s goal is to create the framework for a new program geared towards older patients.

According to Carolyn Karageorges, VP Chief Accounting Officer, Shane will be given a variety of projects and will rotate across different areas of the hospital, with all the accommodation he needs.

“We’re an easy place for him to try out and see what works and what doesn’t work. It’s hard to know what you don’t know. This is a chance for him to figure things out in a safe place,” she said. 

Shane is excited about the opportunity and the chance to not only learn, but also give back to the place that has given him so much. 

“Cincinnati Children’s is the only hospital that could really take care of my condition,” he said.

His mom, Patsy, agrees. She’s proud of her son and specifically credits the important role the Epidermolysis Center and staff has played in his life.

“The EB Center at Cincinnati Children’s is still the cornerstone of Shane’s success,” she said. “Without the constant monitoring of his condition and the incredible hard work of all the doctors and nurses Shane would not be healthy enough to be away at school.”

(Published: June 2019)