"People look at me and say, ‘You don’t have the right to say you have a disability.’” Ben Richards, US Army Major (Ret)
Nine years ago, a suicide car bomber in Iraq smashed into the armored vehicle in which Ben Richards and his men were riding. Although the blast wave slammed them around inside, all were able to walk away from the explosion. Outwardly they seemed fine.
But they weren’t. “I felt fatigued, nauseated, and couldn’t see straight,” said Richards, keynote speaker at Penn Medicine’s recent Mind Your Brain conference, an annual event that provides brain injury survivors and their families with information and resources to help in recovery. He and others had suffered traumatic brain injury (TBI). Three weeks later, another car bomber ended Richards’ military career, leaving him with a severe concussion and years of symptoms that seemed to have no easy resolution. “In the military, only the visibly wounded veterans are heroes. You lose that respect when you have TBI,” he said. In his darkest hours, he thought, “Wouldn’t it be nice if all I was missing was a leg?”
Most people who suffer concussions recover quickly but, in 20 percent of cases, the person experiences cognitive dysfunction that lasts long after the injury itself. TBI survivors at the conference understood Richards’ feelings of depression, isolation, and frustration. It is all too common among this population. “I had so many deficits — lost vocabulary, forgetting things,” said Zoë Rafferty, a young woman speaking as part of the survivors panel. “My anxiety coping skills worsened and my ability to speak was impacted.” They told stories of friends or loved ones not understanding the sudden mood swings or other types of strange behavior. Similar to Richards’ experience in the military, Rebecca Smith, another panelist, said, “My friends didn’t believe I had an injury.”
Although concussions are categorized as mild TBIs, “in some cases, there is permanent damage to the brain – that is not ‘mild,’” said Douglas Smith, MD, director of Penn’s Center for Brain Injury Repair (CBIR), which sponsored the conference.
No definitive treatment exists for TBI, but at the conference, a panel of Penn researchers described ongoing studies for future therapies, such as using restorative brain surgery or deep brain stimulation. In addition, Penn investigators are evaluating how early rehabilitation interventions could translate to better outcomes down the road. “There is no current gold standard to diagnose the severity of concussion in the emergency room, but we’re very involved in creating a new generation of clinical tests,” Smith said. Most recently, researchers from Penn discovered a specific blood biomarker (SNTF) that, when found in elevated levels, is a sign of damage to the brain’s nerve fiber (axon) network and can predict the severity of post-concussion symptoms.
The use of advanced MRI neuroimaging is another potential diagnostic tool being studied. Fiber tractography can pinpoint the exact areas in the brain’s white matter where axonal injury has occurred. “Standard imaging for concussions — CT and MRI scans — will typically show the brain as ‘normal’ because 50 axons are as wide as a single human hair,” he explained.
Although both diagnostic tools are still in the investigative phase, “we’re now looking for ways to finally incorporate them into practice,” Smith said.
After several years of treatments — both standard and investigational— Richards has regained much of his life. “My kids now play with me instead of being afraid.” He urged others to remain hopeful. “Just three years ago I had almost given up.”
Photo captions: Ben Richards (top photo) and Matt Van Kirk and Janine Kirby spoke about the impact of living with traumatic brain injury at Penn Medicine's Mind Your Brain conference.