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Robyn Ryan: Clinical Research and the Journey to Find Answers

Robyn Ryan’s medical journey officially began in 1994 when she was running to catch a school bus and was hit by an oncoming car. Robyn cartwheeled through the air and landed, unconscious, on the asphalt.

The 12-year-old spent the next two months recovering from a torn ligament in her leg. In time, Robyn’s leg healed, and she returned to school, but things still didn’t seem quite right. She was dizzy and light-headed and suffered from frequent headaches. She also seemed strangely unaware of her surroundings, which led to dangerous behaviors.

“I’d cross streets against the light or ride my bike into traffic,” she says. “Everybody thought I was reckless and a daredevil. I didn’t think much of it.”

Robyn’s risk taking led to a string of accidents – falls down icy stairs, bicycle collisions, motorcycle accidents – and a litany of ankle, leg, back and head injuries. Each time, doctors patched her up and sent her on her way.

With no one to connect the dots for her, Robyn persevered. She struggled through high school and went on to art school in Philadelphia, where she lives, and participated in her first clinical trial — a sleep study — just to earn a few dollars.

Despite her best efforts, Robyn couldn’t seem to “get it together.”  After art school she had trouble holding down a job. She had trouble listening to instructions and following rules. She’d get tired and fall asleep on the job. Sometimes she wouldn’t show up at all.

Over the years Robyn moved from one temporary position to another, none of them lasting more than six or eight months. In 2007 she began suffering from debilitating headaches. Her doctor suggested she participate in a clinical trial to see if she could learn anything. Robyn signed up for a trial that required her to wear electrodes taped to her scalp for a few days. Although the study was painless, it didn’t alleviate her headaches or provide any answers.

Out of work and facing a mountain of student loans, Robyn took a shot in the dark.

“I called Health Partners, which is where my doctor was and asked ‘Do you have access to any kind of jobs?’ I explained about my accidents. I didn’t know anything about brain injury at the time, but whoever answered the phone listened and wanted to help.”

Someone at Health Partners connected her with the Pennsylvania Department of Labor & Industry’s Office of Vocational Rehabilitation, which in turn directed her to Moss Rehab at Einstein Healthcare Network.

Finally, Robyn’s luck started to change. Doctors at Moss asked her a lot of questions. They conducted a battery of neurological tests and brain scans, reviewed medical records from all of her accidents, and even asked her about two early childhood falls down staircases that were never documented in her medical record. They discovered Robyn had suffered traumatic brain injuries (TBI) on six different occasions.

The diagnosis enabled Robyn and her care team, which includes a case manager, neurophysiologist and therapist, to address her physical, emotional and social needs in a comprehensive fashion. Her case manager helped her apply for student loan forgiveness and register for a waiver program to pay for her services. Clinicians prescribed medications to alleviate her depression and help manage her anger. In addition, speech, occupational and physical therapists helped her develop skills associated with areas of her brain that hadn’t been damaged. The therapy helped strengthen Robyn’s communication skills and learn to cook.

Robyn, now 35, has had to give up some potentially dangerous activities – such as driving and riding her bike because of her inclination to take risks.

“In a lot of ways I’m still dealing with the same types of problems as before, but at least now I feel like I’m moving forward,” says Robyn, who will soon start work in a call center that employs people with disabilities.

What’s more, she knows there is cause for hope. “TBI has been one of the most difficult things for researchers to understand, but there is a lot of funding now that goes toward brain injury that wasn’t there before,” says Robyn, who hopes to participate in future trials that can shed more light on TBI.

She knows from experience that participating in clinical research doesn’t have to be a long and involved ordeal.

“I think it’s a misconception that a lot of people have that clinical research requires a lot of a participant,” she says. “Sometimes it’s as simple as being interviewed or answering a few questions.”

And no one knows better than Robyn that asking the right questions leads to important answers.

 

By: Shelly Reese

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