Sticks and stones may break your bones, but modern medicine usually helps you get back to normal quickly. Though fractures and other injuries may case aches and pains and damaged ligaments and joints may never be exactly the same as they once were, the scars left by a traumatic brain injury (TBI) often manifest in less visible ways; ways that researchers and clinicians have only just begun to really understand.
“Injuries that cause visible physical disabilities—those that may result in paralysis, or the need for casts and wheelchairs—were long considered to be ‘diseases of the body,’ and diseases that result in disabilities such as personality changes, mood disorders, anxiety, insomnia, addiction, and trouble with memory and attention, were thought of as ‘diseases of the soul.’ But that’s changed,” says Ramon Diaz-Arrastia, associate director for Clinical Research in Penn’s Center for Neurodegeneration and Repair, the presidential professor of Neurology, and the director of the Traumatic Brain Injury Clinical Research Initiative at Penn Medicine. “We know now that brain injuries are not an injury of the soul. A traumatic brain injury (TBI) is a disease of the body—it affects the whole nervous system. The brain is a complex organ, and even though we can’t see its scars in the same way we can see them from other injuries, they are certainly there long after a patient has been treated and ‘recovered.’”
According to the CDC, in the United States alone, an estimated 2.5 million people sustain a TBI each year, and of them, 52,000 die and 280,000 are hospitalized. More than 2.2 million are treated and released from an emergency department, but the impact of a TBI can last well beyond a hospital visit, and without proper attention and care, can change the course of a person’s life.
It’s been 19 years since Amy Kraft’s brain injury and in some ways, she’s still recovering. Kraft, 35, was heading to a coffee shop with some friends after rehearsal for a school play when she was accidentally hit by a car. She was a sophomore in high school, a good student with a solid core group of friends, plans to attend college, and aspirations of being a journalist.
“I don’t remember anything from that day,” says Kraft, who is not a patient of Diaz-Arrastia’s but has become a strong advocate and resource for those with TBIs in the years following her injury, and will be participating in Penn Medicine’s Mind Your Brain conference this month. “The doctors told my parents if I didn’t come out of my coma within a week, it was likely that I would have serious brain damage. I woke up on day six. The first thing I remember is sucking water from a washcloth and seeing my grandmother standing at the foot of my hospital bed.”
In addition to her brain injury, Kraft also suffered a ruptured spleen, broken clavicle, broken ribs, broken femur and humerus, and a host of other injuries. When she was well enough, a neuropsychological exam revealed difficulty with short-term memory, problem-solving skills, and speech, and her math and reading skills were reduced to that of a sixth grader. But, in truth, the worst was yet to come, and there was no test anyone could give her that could predict it.
“I didn’t have any emotional issues at first. I was pretty calm and accepting of the whole thing, and just wanted to get out of rehab and get back to my friends and my life,” Kraft says, adding that she did her rehab exercises practically around the clock for nearly a month in an effort to try and speed her recovery. “Once my hair started growing, I started walking, my short-term memory came back…I looked fine, so nobody thought there could be something else going on.”
Little did she know then that it was only when she tried to go back to her life that the true extent of her injuries would be realized. Diaz-Arrastia says that some TBI patients make full mental and physical recoveries from their injuries and do not experience cognitive issues, but for a large number, the recovery may be only physical, and acclimating to daily life can be difficult.
“I suddenly just didn’t feel like I fit in. I was overwhelmed with feelings of inadequacy. I didn’t know how to fit in, and I didn’t know how to socialize,” Kraft explains. It wasn’t long before she turned to drugs and alcohol for relief. “I got into a bad place very quickly.” By the time she was 17, Kraft was “a black-out drinker,” and by the time she was 18, she was homeless and living out of her car.
Part of the problem, Kraft says, was she couldn’t understand what was happening to her. Her family, she says, couldn’t explain or understand the sudden changes in her behavior and didn’t know where to turn for help.
“For a lot of reasons it wasn’t uncommon 10 or 15 years ago for TBI patients to be sent home with zero follow-up, and zero resources or attention,” Diaz-Arrastia says. “Patients would come for follow-up care on their other injuries with specialists in orthopedics or trauma, but three or six months later those injuries were largely healed and almost all of the disability was related to the brain injury. Care that’s targeted at the TBI is certainly getting better, but it continues to be an unmet need.”
Recognizing the unmet need and the immense number of patients who could benefit from support services, Diaz-Arrastia has spent the past 18 months pulling together a team of clinical specialists who are focused specifically on these vulnerable and often overlooked families.
“Clinical care for TBIs has come a long way, but it’s still behind other neurological subspecialties,” says Megan Moyer, a nurse practitioner in neurology who heads up Penn’s TBI support group for patients and family members. “With a paucity of specialists focusing on these injuries, patients often are lost in the shuffle of the system, going to primary care for follow-ups, or seeing specialists only for other injuries that aren’t related to the TBI.”
Penn’s TBI support group started six months ago and, in that short time, has seen remarkable growth with patients and their family members attending meetings for the education as much as the support and knowledge that they aren’t alone.
Despite not having access to the resources, Amy Kraft was one of the lucky ones. When she realized that she was going to die if she didn’t make major changes, she took her first steps toward rehab—both for her substance abuse and her TBI. Today, she’s been sober for 16 years and was even able to still realize her dreams of becoming a journalist.
Still, even after getting clean, Kraft says she dealt with anxiety and insomnia for years. It wasn’t until a therapist suggested some of her struggles could be related to her TBI and started addressing it head on that her symptoms began to subside.
It’s a realization Moyer says she hears often from Penn patients.
“Patients who’ve experienced traumatic brain injuries and their family members need a place to go where they can realize they aren’t crazy, and they aren’t alone,” Moyer says. “We hear a lot of patients say they just didn’t know that a TBI could cause changes in mood or behavior or insomnia. So, for them, just being able to point to something and say ‘ah-ha, that’s why this is happening to me,’ makes a world of difference.”
Top photo: Amy Kraft and her family. Inset photo: Kraft recovering after a traumatic brain injury from a car accident. (Courtesy: Amy Kraft)