Apathy around National Stroke Awareness Month is realby Jodi Gehring, MD on May 30, 2017 • 9:55 am 7 Comments
I have spent the past week debating whether to post publicly about an email I received from The State (South Carolina’s most widely distributed daily newspaper). Ultimately, I concluded that it was important to do so. Stroke patients need a voice, and while The Stroke Blog was started to empower the younger stroke population through sharing information pertaining to their circumstances, empowerment leads to advocacy.
Following my post on May 18, 2017, Call To Action: Americans Fear Terrorism More Than What Is Likely To Kill Them, I decided to submit the text to The State in hopes of reaching a broad audience in a place that lies in the heart of the “Stroke Belt.” Over half of hospital admissions for stroke in South Carolina involve patients under the age of 65. It seemed an appropriate medium for providing education about stroke during National Stroke Awareness Month.
The email response I received from one of the editors, frankly, shocked me: “THanks [sic] but we’ll have to pass. We don’t generally run columns on all these made-up months, weeks and days…”
I had difficulty understanding what prompted this. Stroke has created a public health crisis, has disabled millions of Americans, and remains the fifth leading cause of death in the U.S, killing over 130,000 people annually in our country. In addition to these alarming numbers, according to the National Stroke Association, as many as 80% of strokes can be prevented. Plus, we have effective treatments within the first few hours of when a stroke starts! Therefore, stroke seemed like the perfect condition upon which to build more awareness. It’s devastating, but we have the power to change that on a large scale, both through preventative efforts and by rapidly treating strokes when they occur.
After deliberating, I replied to this particular editor, and explained that Stroke Awareness Month was being recognized by the mainstream media and hospitals across the country. This person’s quick response was that all months/days devoted to causes should be viewed the same way, whether they were about heart attacks, diabetes, “or chocolate or bicycling or … anything.”
At that point, I called a friend who has worked with hundreds of stroke patients professionally, and asked her what I was missing. I understood that there were numerous “_____ Awareness Month” recognitions, but it made perfect sense to me that the importance of calling 911, the recognition that prompt medical attention can save a person from lifelong disability, the understanding that stroke is not just a disease of the elderly, that education about the importance of smoking cessation was critical, that the knowledge that patients with high blood pressure should comply with taking their medications would all be important points for coverage in the media. And raising awareness around issues that can lessen the incidence of a disease that kills so many people annually still seemed like a good thing to me. As much as I love chocolate (and I do – seriously), lumping awareness around stroke and awareness around chocolate into the same statement rubbed me the wrong way.
In talking with my friend, she reminded me that Stroke Awareness Month was, indeed, “made up” – by President George H.W. Bush in 1989 when he signed a proclamation declaring every May as “Stroke Awareness Month.” I then began reading articles, editorials, and reflections about Stroke Awareness Month, and contemplated how important this time is to so many people affected by stroke. One of my favorites was a piece by Kirk Douglas from 2014 on The Huffington Post (click to read it).
I truly believe that everyone has the right to his or her opinions, and the right to express these opinions with language. The State can make its own choices about the importance or lack of importance of Stroke Awareness Month, and I can make mine. I believe we do need more awareness around stroke, because I want to be treating more patients with t-PA and mechanical thrombectomy, but I can’t if they don’t call 911 or get to an emergency department quickly after a stroke starts. If they lie down on the couch to take a nap, there is a good likelihood that it will be too late to treat them once they show up at a hospital. That decision – whether to call 911 or lie down – often alters the course of a person’s life, determines whether that person will ever return to work again, will be able to care for himself or require assistance from others for decades to come.
What ultimately shifts people in the 911 direction over the lying down direction?
Dean Reinke says:
May 30, 2017
I believe we need more awareness of all the problems in stroke that haven’t been solved. With no acknowledgement of these problems no one ever works on solving them.
1. Only 10% of patients get to full recovery.
2. tPA only fully works to reverse the stroke 12% of the time. Known since 1996.
3. No protocols to prevent your 33% dementia chance post-stroke from an Australian study.
4. Nothing to alleviate your fatigue.
5. Nothing that will cure your spasticity.
6. Nothing on cognitive training unless you find this yourself.
7. No published stroke rehab protocols.
8. No way to compare your stroke hospital results vs. other stroke hospitals.
Toni Amick says:
May 30, 2017
Thank you for continuing to bring awareness and advocating through the work you do every single day for stroke patients everywhere. Awareness is key. Had I not been in a hospital environment when I had my brainstem stroke at age 26, I would have went to lie back down and sleep, probably to never wake up or have permanent deficits. Thank you for doing what you do!
Leigh Altman says:
May 30, 2017
Mary Kay Ballasiotes says:
May 30, 2017
I thought your May 18th article was extremely important to share, no matter what month it was! If the contact person at The State had actually read your submission and had the open-mindedness to think of it as a public service announcement, it may have made it through the screening. Thank you for continuing to write thought provoking articles Dr. Dodds. Perhaps you can resubmit it in June, not with the intent for awareness, but with the importance of education of stroke at any time of the year.
D fouhy says:
May 30, 2017
I am a stroke survivor! Living with aphasia, however i understand both sides of this situation!
It is very important to promote stroke awarness in the community! But i also understand the attitude of the editor re made up months! Tbere seems to be an almost never ending stream of months/weeks for one thing or another. Mostly who cares rubbish! So dont get twisted over the editors decision? There are other mediums that can be used to promote stroke awareness! Maybe look at them?
Ann Crowley says:
May 31, 2017
Yet, The State published an article lest May (2016) about the events related to May as National Bike Month.
Cynthia talerico says:
Jun 3, 2017
If more information were written about stroke awareness and outcomes, we would have less people with brain disabilities, decreasing disabilities and decreasing long ter stroke management, hence decreasing cost for this care. I think your promoting awareness/ education is the right thing to do . Forewarned can cause fore- armed. Although draining the victims energy it is best not to rest/ sleep but get treatment asap! The paper should be proud to publish the article