BRONX, NY — In the civilian world, the word “concussion” might evoke the image of a football player and the sound of helmet-to-helmet contact. In a military environment, it might evoke the image of a soldier in the path of a blast wave. In both cases, the commonality is that, more likely than not, the image evoked is of a man.
Research has shown that, given the same parameters—playing a sport with the same rules for men as for women, for example—women are more susceptible to concussion. In addition, women will experience more symptoms with the concussion, and those symptoms will be more severe and last longer. However, because much of the research into concussion has been done in and around sports, and the highest-risk sports (football, rugby, ice hockey) are dominated by men, there is a dearth of research into diagnosis and treatment of concussions in women.
Katherine Snedaker, LCSW, hopes to change that. A licensed clinical social worker, Snedaker is the founder of PINK Concussions—an advocacy group dedicated to improving pre-injury education and post-injury medical care for women and girls affected by brain injury.
Dating back to her teens, Snedaker has had personal experience with concussions. But it was in 2008, when her son suffered a series of concussions that resulted in nearly a year of missed school, that she began a deep dive into the current state of research, seeking out concussion experts and attending medical conferences in search of better treatment options. She quickly found herself becoming a resource for other parents seeking answers.
“Over the next five years, I worked as a social worker in two concussion clinics and received calls from the parents of teen girls suffering from post-concussion syndrome (PCS),” she explained. She was especially struck by the dual isolation of these PCS sufferers—isolated first by the “rest and wait” treatment and then isolated again when they were unable to return easily to their former routine.
“I ran four conferences in my state to educate over 600 school nurses and medical providers on how best to return students with concussions into schools and sports,” she said. “By 2012, between running a PCS support group for female high school students and continuing to be called by parents of teen girls—all struggling with the medical nightmares of PCS–I was inspired to found PINK Concussions as a website summarizing all the research on female concussions.”
The organization has grown far beyond a simple information hub. PINK Concussions has hosted medical summits, organized and published research and fostered online communities centered on providing support and information to women suffering from brain injury. Most recently, PINK Concussions has partnered with VA’s National Center for PTSD to encourage women to donate their brains for the purpose of research on the effects of TBI and PTSD. According to VA, the focus of TBI and PTSD brain research has primarily been based on male brains, with no active recruitment of women to contribute to the available data. While there is postmortem brain tissue available for study of injury in men, there’s almost none for women. There’s also a significant lack of research on chronic traumatic encephalopathy (CTE) in women, with only two published studies focused on women, and both of those dating back to the early 1990s.
With the Pink Brain Pledge, Snedaker and VA hope that more women contributing to VA’s National PTSD Brain Bank will result in more research being conducted and in deeper investigations into how concussions manifest differently in men and women. Since the initiative was announced in December, nearly 200 women have pledged to donate their brains.
“Even today, most woman and medical providers and many researchers are unaware of the sex and gender differences in how females experience brain injury,” Snedaker explained. “This lack of sex and gendered approach to female brain injury seriously inhibits diagnosis and appropriate intervention across the care continuum and affects the development and delivery of appropriate healthcare service.”
In the meantime, Snedaker continues acting in the role of “concussion mother,” just on a far bigger scale. She personally moderates online support groups for over 2,400 members. Those groups include patients, caregivers, parents, veterans and clinicians working in brain injury. She also hasn’t forgotten those girls suffering from PCS that she met while working in the concussion clinics. PINK Concussions fosters online internships and networking for young women isolated by concussion. Some of their stories will appear in the upcoming book “Pink Concussions: The Faces of Female Brain Injury.”