Searching for Female CTE?

ORIGINALLY POSTED 11/21/15

There is nothing to be found on the internet about CTE in women. Is CTE is very rare in women or are women's brains very rarely examined for CTE? 

I wanted to find out and I thought Dr. Bennet Omalu was the best person to interview on female brains and CTE. And in February 2015, I had the chance to ask Dr. Bennet Omalu in person if he had ever seen a case of CTE in a female's brain. I was at Santa Clara Brain Injury Conference presenting on the PINKconcussions female concussion research study, and he was presenting "Emerging In-Vivo Diagnosis of Chronic Traumatic Encephalopathy (CTE)" on his efforts and reasons behind his naming of term "CTE." 

Meeting Dr. Bennet Omalu at Santa Clara Brain Injury Conference, Feb, 2015

Meeting Dr. Bennet Omalu at Santa Clara Brain Injury Conference, Feb, 2015

When I asked, Dr. Omalu told me he had not himself seen an example of CTE in a woman's brain as very few female brains have even been examined; but he had read a paper about one case of CTE in a female.

Finding this one paper became my quest for the Holy Grail, but despite my best efforts and asking a number of knowledgeable people, I was unable to find any such paper. Even my regular scientific sleuths were unable to find any reference of female CTE in their queries. 

With the National Summit on Female Concussions and other TBIs only four months away, I was running out of time and decided if anyone would know of this paper, it would be Dr. Ann McKee of BU CTE. So I made it my mission to ask Dr. McKee who I knew would be at the Concussion Legacy Foundation Gala on November 4, 2015. Luckily for me, there was an empty seat at her table, and I was able to ask her if she knew of the paper Dr. Omalu had read. 

Dr. McKee replied, "there is not just one paper, but there are two papers on female CTE," and she would send both to me. And she did send me the two papers for which I am most grateful.

One paper she sent was by Dr. Patrick Hof on "Lucy," a 24 year old Autistic woman and the other paper by Dr. G. W. Roberts on "Wilma," a 76 year old woman who was the victim of domestic violence.

I was able to track down and interview Dr. Hof. Here are my post on my interview with Prof. Hof on Lucy. But since I have not yet been able to locate Dr. Roberts, here are just my thoughts on Dr. Roberts' paper on Wilma. I hope to find Dr. Roberts to learn more about Wilma. 

LINKS: Lucy, Wilma

Coming soon: Our census on female brains and potential female donors in US Brain Banks

Guest Blog: Concussions: The Gender Differences

Arleigha Cook By Arleigha Cook as a Guest Blogger

“You just have to get back out there.”

“That’s not a concussion headache.  That’s just a hunger headache.”

“Just start exercising.  That helped me.”

These quotes are all from conversations I had regarding concussions.  At a glance, I’m sure you sense a pattern.  Each of the above is a well-intentioned piece of advice, but, characterized by the notorious word “just,” each of these replies is incurably dismissive. In fact, they all tore at something inside me, as if the speaker took a look at me, saw my hope for validation of my concussion symptoms, and then pulled out the carpet from underneath me with an overtly simplistic suggestion of a quick recovery method that I should have seen before.

Interestingly, these people were brain injury survivors themselves.  And they were all male.

Hearing from another concussed individual that I should have been doing something different from the get-go – especially something as simple as beginning to exercise or just “getting back out there” was devastating.  To this day, each time I hear a suggestion of that nature, I sigh and push away an emotional reaction.  It was especially invalidating to hear from one of my friends (a skier and rugby player who had previously sustained three concussions) who said, “That’s not a concussion headache.  That’s just a hunger headache.”  To me, the pain of a “hunger headache” is the same as that of a “concussion headache.”  A hunger headache is a concussion headache.  Likewise, I have not been able to exercise without almost immediately experiencing concussion symptoms for over a year and seven months – I’m sure you can imagine how quickly I dismissed his “advice.”

These interactions got me thinking: men seem to recover from concussions more quickly than women do.  And even when they don’t, they seem to have a dismissive or nonchalant attitude about their recovery. So I started researching that idea, but only came across studies suggesting the contrary.  For example, a recent study published in the journal Radiology suggests that men actually take longer to recover from a concussion than women (see a Huffington Post article about the study here).While I have always thought I sounded like a hypochondriac, my tendency to air on the safe side may actually prove more beneficial than the laissez faire attitudes of concussed males. More than a few times I’ve come across men with concussion experience who think I’m exaggerating my symptoms (hence, “That’s not a concussion headache.  That’s a hunger headache.”).  The study featured in the Huffington Post article above even found, through diffusion tensor imaging (DTI – a form of MRI), that men seem to sustain significantly more abnormalities in a particular area in the white matter of their brains, otherwise known to scientists as the Uncinate Fasciculus.

Is this related to a basic genetic difference between men and women?  Is it the significant change to the Uncinate Fasciculus that causes male concussion patients to underestimate the time, importance, and attention their brains need in order to recover more quickly and effectively?  Presently, it’s hard to say.

My observations – which largely consist of college-age male athletes who receive concussions from football, lacrosse, and soccer – indicate that most men may have an oversimplified idea of the effort and duration involved in a timely and effective recovery.  While many women who have sustained one or moreconcussions seem to doubt their recovery or want to protect themselves through limiting exercise or other potentially dangerous activities, men seem to bear few reservations about returning to physical activity post-injury.  And, research has shown that maintaining a lower level of physical activity – if possible – can aid in the recovery process (see University of Buffalo’s 2013 study “Exercise treatment for postconcussion syndrome: a pilot study of changes in functional magnetic resonance imaging activation, physiology, and symptoms”).

This leads me to consider whether or not one’s cognitions can influence recovery speed.  There are biological differences thatinfluence concussion incurrence rates and recovery in men (such as neck strength, which can affect the damage done to the brain upon impact), but psychological state may be crucial in regards to recovery as well.  My questions: Is a healthy mental state essential for faster recovery?  Do males with concussions tend to have healthier mental states than do females with concussions?  If so, how and to what degree does this impact recovery?  My personal observation dictates that many athletes who have ended their careers as a result of concussion buildup have experienced long-term depression and anxiety because of the sudden life change due to the incurrence of brain injury.  I have especially noticed this in females.  This is not to say that males do not experience these manifestations of psychological distress; rather, it is to insinuate that psychological elements of recovery seem to affect women to a more severe degree and for a longer duration.

For now, we can only hypothesize.  The question of gender influences on concussion recovery is one that is currently being studied, and with the accelerating growth of the concussion field, there is much more to learn about gender, psychology, and outside factors that impact the recovery process.  And of course, with the more that we learn, the more we discover there is to learn.  There may be a large psychological component in recovery, and males may be predisposed to more easilyreframing cognitions surrounding this invisible injury.  Certainly there should be research done on this in the future.

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Arleigha Cook is a brain injury survivor and a former soccer player and sprinter for Trinity’s Womens’ soccer and track and field teams.  After surviving her fourth concussion and receiving a diagnosis of Post-Concussion Syndrome, she has turned her focus to educating others about the effects of concussions.  An English major with a concentration in creative writing, Arleigha started a blog, www.brainmatter4.blogspot.com, on which she posts her thoughts about her own personal experiences with brain injury.  She has also been a guest blogger for B Stigma-Free and has spoken with Elite Sports Medicine at the Connecticut Children’s Medical Center about concussions, using her personal story as an example.  Currently, she is over 1.5 years into her recovery.

 

It's 10 o'clock and do you know where your bed is? Effect of late nights and sub-optimal sleep on the brain.

Our focus is on concussions and sub-concussive hits damage to the brain, but good to be reminded about the effect of late nights and sub-optimal sleep on the brain.Lose Sleep, Lose Your Mind And Health

Explore more infographics like this one on the web's largest information design community - Visually.

 

Launch of National Study of Female Athletes and Concussions

Press Release For Immediate Release: Tuesday, September 17, 2013 

Launch of National Study of Female Athletes and Concussions

Study begins October 1, to explore Female Athletes’ Experiences with Concussions

 

Contact:

Katherine Snedaker, MSW, PinkConcussions.com / 203-984-0860 PinkConcussions@gmail.com

Dr. Jimmy Sanderson, Clemson University / 864-656-3996             jsande6@clemson.edu

 

Norwalk, CT – Men’s football concussions are in the news daily from former and current players, but there's rarely news about female athletes' experiences with concussions. Female athletes experience a significant number of concussions, yet they seem too often overlooked when concussions are discussed in mainstream media. Mentioned in the report American Medical Society for Sports Medicine Position Statement: Concussion in Sport 2012data suggest that in sports with similar rules female athletes sustain more concussions than their male counterparts. In addition, female athletes experience or report a higher number and severity of symptoms as well as a longer duration of recovery than male athletes in several studies.

This new study will be focused on female athletes from all sports, and their past and present experiences with concussions. Current and former athletes are eligible for this study conducted by researchers from Clemson University with the advocacy group, Pink Concussions. For this study, female athletes, age 18 and over, who are willing to participate can sign up now at PinkConcussions.com. On October 1, participants will be emailed a link to a twenty-minute online survey about their experiences with sports and non-sport concussions and reporting concussions.

 

This research study will also explore female athletes' experiences with reporting concussions, another salient avenue in the concussions dialogue, as many athletes do not report concussions willingly or are mis-diagnosed.

The research also will investigate female athletes' willingness to have genetic testing that may show links to the repair and recovery of brain cells after concussion. After finishing the survey, participants in the study can opt for an additional study and consider submitting DNA collected by a cheek swab to be tested for variants at the Apolipoprotein E (APOE) gene.  Testing for certain genes has previously documented an association between specific genetic factors and outcomes from injuries such as concussion.

Apolipoprotein E is a protein that is important in the repair and recovery of brain cells that have been damaged due to concussion. The clinical studies point to a relationship between certain genetic signatures and poorer overall concussion response. While additional evidence is needed to better understand the relationship between APOE status and concussion outcomes, the American Academy of Neurology introduced APOE testing into concussion management guidelines this year.

The results of this research will help further concussion research by focusing on the communicative element present in this issue, and the results of the study will be helpful for athletes, parents, administrators, physicians, and advocates. This research will be beneficial in shedding light on female athletes’ experiences with concussions and reporting concussions. Often female athletes are omitted from the public discourse surrounding concussions and the results of this research will assist concussion advocates in raising more awareness about concussion issues in sports.

Co-Researchers in this study are Dr. Jimmy Sanderson and Dr. Melinda Weathers in the Department of Communication Studies at Clemson University, along with Ms. Katherine Snedaker, MSW, of PinkConcussions.com.

# # #

For more information about this study, help in recruiting athletes or to be a participate, please fill the contact form at PinkConcussions.com or contact:

Dr. Jimmy Sanderson

Clemson University

jsande6@clemson.edu

864-656-3996

Katherine Snedaker

PinkConcussions.com

PinkConcussions@gmail.com

203-984-0860