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here’s something wrong with the brain banks created to study the dangers of repeated trauma to the head: Almost all the brains donated so far belonged to men.

It’s just one example of how the study of brain trauma in women lags behind — even though women get concussions at higher rates than men in many sports and may suffer more severe and persistent symptoms.

“If concussion is the invisible injury, then females are the invisible population within that injury,” said Katherine Snedaker, a licensed clinical social worker from Norwalk, Conn., who founded the nonprofit PINK Concussions in 2013 to focus attention on the issue.

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Evidence is building that the response to traumatic injury is different enough in females that they might benefit from gender-specific treatment, as they do with cardiac disease. But the data to create such guidelines simply aren’t there.

“It’s an incredible gap in our knowledge,” said Angela Colantonio, director of the Rehabilitation Science Institute at the University of Toronto. “It’s just not acceptable.”

One examination of 200 studies on prognosis after mild traumatic brain injury found only 7 percent separated out women, Colantonio said. And if female athletes are overlooked, other groups vulnerable to concussion — aging women, women in prison, and domestic abuse survivors — have been nearly entirely ignored.

But a growing number of researchers are fighting to get the data they need. They’re helped by a new requirement that all research funded by the National Institutes for Health explicitly address sex and gender. They’re also buoyed by increasing public interest in the topic, including a congressional briefing on female brain injury held last June.

Meanwhile, a raft of new studies are starting to include women. A $30 million study by the Pentagon and the NCAA is currently tracking 1,288 college athletes with concussions; one-third are female.

The ‘mean girls’ phenomenon

Many studies show the female brain does appear to react differently when concussed. Female rats behave differently than males, and there are biological differences, too — females have cycling hormones, higher rates of blood flow through their brains, less myelin sheathing around nerve fibers, and more migraine headaches. All those factors might affect concussion response.

“Boys and girls — whether you’re a rat or a human — are different,” said Mayumi Prins, a neuroscientist and associate director of the UCLA Steve Tisch BrainSPORT Program, whose work is largely funded by the NIH. “It’s not some great stretch of the imagination to think there would be differences in response to disease and injury.”

The program’s director, Dr. Christopher Giza, agreed, but offered a note of caution: He said many studies that show differences in females are small, poorly controlled, and conducted by researchers (like him, he acknowledged) who may be biased toward finding results showing sex differences. Giza, who has received research funds from the NFL and is helping to guide the NCAA/Defense Department study, also notes that there have been plenty of studies showing no gender differences, though those rarely get media attention.

“It’s easy to drink your own Kool-Aid,” he said.

So, what’s the evidence for gender difference?

A 2013 study of 144 women who came to emergency room departments following concussions offers some tantalizing hints.

It showed that women who were concussed during the two weeks before their period had a slower recovery and poorer outcome one month later than those who were hurt in the two weeks after their period — or those who were taking birth control pills.

More evidence that the hormonal cycle may play a key role: Premenstrual girls and postmenopausal women have concussion outcomes similar to men, said Dr. Jeffrey Bazarian, a concussion expert at the University of Rochester who is also participating in the NCAA/Defense Department study.

Bazarian suspects blows to the head may debilitate the pituitary gland at the base of the brain. When it’s healthy, the pituitary gland stimulates the ovaries to release progesterone, which promotes both calming and brain cell growth. Damaging that output at certain times during a woman’s hormonal cycle may hit neurons particularly hard, worsening symptoms and leading to the social withdrawal many concussed athletes report.

Prins has seen such withdrawal in female rats that are concussed. And a study from another lab, aptly titled “Mean Girls,” found female rats with brain injuries were excluded from play more than injured male rats.

Another issue is neck strength. Women in general have weaker, thinner, and less stiff necks than men and are therefore less able to brace for anticipated hits. They are also more prone to migraines, which may affect electrical patterns in the brain in ways similar to concussion.

Brittni Souder
Brittni Souder, an assistant soccer coach at Frederick Community College, suffered numerous concussions during her playing career at Hood College and during high school. Souder still feels the effects of the trauma, which has forced her to wear prescription sunglasses. Graham Cullen/The Frederick News-Post

Social pressure to play down symptoms?

Even so, there’s still a big debate in the field about whether concussions are worse in females for biological reasons — or whether they just appear worse because women are more willing to disclose symptoms.

Studies show both male and females athletes are prone to lie about concussions in order to stay in games, but men do so at slightly higher rates. (One study from earlier this year showed male athletes lied about concussion 79 percent of the time while women did so 70 percent of the time.)

Snedaker would like to see more research on whether women recover more slowly — and whether they feel pressure to keep quiet about symptoms that linger for weeks or months. “When a girl says she still needs to go to the nurse four weeks after a concussion,” she said, “she gets judged as a malingerer or someone with a mental health problem.”

Alarmingly, new research shows the increased awareness about concussions is not encouraging more athletes from either gender to report their injuries, said Tracey Covassin, an associate professor and athletic trainer at Michigan State University. She was one of the first to report, in 2003, that females suffer concussions at nearly twice the rate of men playing similar sports.

Brittni Souder, 28, estimates she’s had more than 10 concussions — many while playing soccer at Hood College in Frederick, Md. The symptoms grew so bad, she had surgery to relieve pressure in her brain.

“There’s pictures of me on the field — you can see how not there I am. My eyes are like zombies,” she said.

Souder had to leave campus and finish school from home due to concussion symptoms. She’s still plagued with headaches, sensitivity to light, and an inability to concentrate that’s kept her from pursuing her goal of graduate study.

Now an assistant soccer coach at Frederick Community College and a board member of PINK Concussions — which is funded by private donors, including the NCAA — Souder is adamant about pulling her injured players from games despite their protests. She believes that repeated subconcussive hits damaged her injured brain while it was still trying to heal.

She doesn’t want her players suffering the same fate.

A plea for women to donate their brains

A looming question is whether women who suffer repeated brain trauma may be prone to developing chronic traumatic encephalopathy, or CTE. There are two reports of CTE-like damage in female brains in the medical research literature from 1990: one, a severely autistic girl who hit her head repeatedly; the other, a wife so badly abused she developed the cauliflower ears seen in boxers.

Concussions, or even more mild, repetitive head trauma, may lead to a degenerative brain disorder called Chronic Traumatic Encephalopathy. Alex Hogan, Hyacinth Empinado/STAT

The famed brain bank at Boston University has detected CTE in 236 of 377 brains donated to the research lab.

But only four of those brains belonged to women. None had CTE.

Obtaining female brains is now one of the bank’s major goals. Soccer stars Brandi Chastain, Abby Wambach, and Megan Rapinoe are among a handful of female athletes who have pledged to donate their brains to be studied after their deaths.

Snedaker plans to donate her brain as well.

Correction: A previous version of this story misstated who conducted a review of gender analysis in 200 studies on traumatic brain injury.

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  • I will likely donate my brain as well. I’ve had concussions all my life ranging from bike accidents, motor vehicle accidents including a head on collision, also severe domestic abuse, many many blows to the head, more recently blows to the temple. The hardest loss was when I was 22. I was strangled so bad that I was only a moment away from death, was unconscious for an unknown amount of time and woke up in my own urine laying in the middle of a driveway. The bike accident was when I was 9. Neurologist recently confirmed damage to my brain, and with things worsening, I’m currently being recommended and referred to different specialists at this time for further review and testing.

  • Hi, so it is hard to admit but the truth is I’ve suffered 11 concussions and feel as though I’m experiencing some long term effects. I’ve noticed that diagnosing and treatment for people going through this is limited. Is there anything I can do to help?

  • I’ve told you about my diagnosis after colon surgery but what I never told you was in 1983 I was in an awful accident while working as a corporate trainer for Houlihans in Cherry Hill N.J. Away from home training potential employees for appitizer cooking behind the bar very high pace multitasking we were all put up in the Cherry Hill Inn Corporate Zcenter.during my work there I was involved in an accident initiated by 2employees I was told since till this day I have no knowledge of what had happened to me I was put in my room & left for dead for 5 days my face was verturly gone as was my teeth I couldn’t stand up w/o vomiting what I thought was my own body digesting itself. It was Dec.5 1983. I had green tinted contacts in my eyes & carried blood card cuz I have rare blood barely able to see I wondered why if I was taken to an ER would they not examine my eyes for brain function ?After they opened their Restauraunt I was taken out of my room & put in the JFK Memorial Hospital I had a fractured skull left & right subdural hematoma w a possibility of pituitary damage.i was put in an enclosed glass room & only then did they call my parents I was 28 yrs old unattended oozing bloody wounds above my left eye told me I was never taken to an ER before walking me to my room & told ” if I don’t feel good don’t come to work all these yrs later I try daily to try to remember something from that night .Being macrobiotic & vegan since I was 19 is wat saved me I was not supposed to survive but I did in just 3 months I married & had a beautiful 9lb 31/2 oz baby girl in a birthing center my marriage was very violent & I took to head banging in times of extreme stress I had been left w a distorted loss of smell often overwhelming often what others couldn’t smell at all.i lived a full life then the news of Encephalamacia.i had called Dr.Wayne Gorden at Mount Sini Medical Center looking for answers clinical trials and most of all CTE & it’s relationship to encephamalacia & to my shock after all my repetitive head banging he said there was no connection at all to them both .i just wanted to tell my whole story because I strongly disagree with Dr.Wayne Gorden & I would like to get into some clinical test trials to help all the woman who suffer in silence get the help & support we all need thank you for hearing my story,Diane Moore

  • I have had my head hit from childhood into adulthood.. All due to physical abuse.. I’ve been diagnosed PTSD, bipolar Il, severe depression.. Have tried numerous times to commit suicide unsuccessfully starting from age 14 up till my current age of 49.. I’ve been knocked out cold on several occasions.. I’ve tried numerous anti depressants & no one can actually pinpoint the problem.. I’m miserable & have been for a very long time.. Is there anyone out there who can help me??? Plz!!! May I have CTE??

  • I’ve had multiple concussions & Tramatic brain injury ;after routine colon surgery I was diagnosed with encepathomala.i would be interested in any test trials as my sense of smell is altered as well . I am interested in donating my brain so others could benifit from conclusive study.i am a 60 yr.old white woman w multiple disabilities.my first Tramatic brain injury was at the age of 28.I was macrobiotic doing chelation therepy & colonics & following a holistic lifestyle I recuperated in 3 months from what was deemed a near fatal accident.

  • This article is entitled “Brains wanted” and ends with a section called “A plea for women to donate their brains” but gives no information on how to do this, or contact info for the BU brain registry. Of note, the brain registry website specifies that the registry is for athletes and military personnel (http://www.bu.edu/cte/our-research/brain-donation-registry/), but your article doesn’t mention this requirement.

  • This is exciting news! Kudos to this doctor and this study because it’s sorely needed. I participated in a fiber tracking study for my TBI, so I understand what is being said in this article. It’s absolutely true. I’d be happy to be in one again. My experience mirrors what this article says about the treatment of woman and concussions.

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