Headaches. Shortened attention span. Extreme fatigue. Information processing issues. Difficulty with everyday tasks. All of these are just a few of the many symptoms brain injury survivors are intimately familiar with (WebMD, 2021). The relationship between these symptoms and specific brain injuries are poorly understood and made more frustrating by a lack of effective treatment. Exacerbating the issue is a critical gap in advocacy—leaving hundreds of thousands of brain injury survivors to navigate their own, debilitating condition.
With little in the way of professional help, many brain injury survivors turn to social media and digital networks as a last resort. Communities have arisen in which patients share stories, successes, failures, and tips in relation to their condition. In addition to social support, this anecdotal information offers guidance for unraveling complex and unique experiences when all else has failed.
The need for more research to guide brain injury diagnosis, treatment, and advocacy has been noted in the scientific community for some time (ACRM, 2014). Nonetheless, progress in this domain continues to lag. With 1.7 million people suffering a traumatic brain injury each year—not to mention the millions of other acquired brain injuries—this translates to millions of lives cut short of their maximum potential (AAMC, 2019). All the more irritating is the exorbitant amount of resources funneled into brain injury research for professional sports. More often than not, the condition of focus is unique to athletes. The result? Research blasts ahead for players on the field while the majority of brain injury survivors are, quite literally, left on the sidelines.
Power of Patients tackles this pervasive issue head-on by offering brain injury survivors our powerful Dashboard. With effortless symptom and trigger tracking, seamless data visualization, and an abundance of professional resources, the Dashboard empowers patients to understand their condition and access better care. At the same time, powerful algorithms and artificial intelligence innovatively organize patient data to catalyze brain injury research in clinical trials. The Dashboard caters to an array of conditions—traumatic brain injury, concussion, Alzheimer’s, Parkinson’s, and stroke to name a few. As of 2020, Power of Patients is extending this resource to a new, quickly growing, population. While different at face value, this cohort shares startling similarities to the brain injury community. They call themselves COVID-19 Long Haulers.
“COVID has eaten my brain,” jokes a 32-year-old long hauler, “I can’t remember how to remember words [or] keep track of medications…my brain just feels like there’s a fog” (JAMA, 2020).
Headaches, shortened attention span, extreme fatigue, information processing issues, and difficulty with everyday tasks are just a few of the symptoms which characterize long haulers and cause a lasting damper on their lives (Nature, 2020). Sound familiar? If you’re a brain injury survivor, it might. But the similarities don’t end there. The long hauler experience is marked by a notable sense of neglect. Too often, their ongoing, invisible symptoms are written off as anxiety or dramatization—particularly among women (JAMA, 2020). With physicians failing to acknowledge the experience of patients, long haulers find themselves navigating their debilitating experience alone. Lingering symptoms from COVID-19 are not always mild. Many patients find themselves unable to work even for short periods of time (Nature, 2020). Simple daily tasks and organization can become challenging. These manifestations can have serious implications for the individual’s career, family, and broader health.
The realization that lasting symptoms of COVID-19 are a pervasive issue has arisen largely from social media. A growing body of online support groups can be found on Facebook, Twitter, and other platforms for the sole purpose of connecting long haulers (Scientific American, 2021). With little scientific data and dismissive healthcare professionals, these networks are the only places to acquire information—a reality that echoes the haunting experience of brain injury survivors.
Just as with brain injuries, lasting COVID-19 symptoms warrant more research than currently exists. With 10% of COVID-19 patients experiencing prolonged symptoms, and almost 90 million worldwide cases, the human burden of this condition is extensive (Nature, 2020). Long haulers suffer in the shadow of a tremendous amount of preventative and curative research.
They find themselves in close proximity to brain injury survivors, teetering at the fringe of an industry investing enormous amounts of resources into limited aspects of their disease.
The symptoms, lack of research, and neglect draw clear parallels between the experience of these two cohorts. However, new research shows that the brain tissue itself is as far as we need to look for overlaps. Magnetic resonance microscopy on the brains of COVID-19 patients yielded concerning findings. Congested blood vessels, solute leakage, microhemorrhages, and a buildup of immune cells were observed in numerous samples (NEJM, 2020). These observations have the propensity to interfere with brain function—yielding damage and symptoms similar to many of the acquired brain injuries discussed.
The correlation between brain injuries and long haulers is undeniable. The shared need for improved diagnostics, treatment, and advocacy is even more blatant. For both cohorts, the Power of Patients Dashboard offers a powerful stepping stone for better data and resources. When patients track their symptoms and triggers, the software captures a chronological picture of their hidden experience over time. Leveraging this tool helps patients understand their unique condition and, in collaboration with a healthcare provider, access effective treatment. In combination with Power of Patients supplementary resources, the Dashboard will elevate brain injury patients and long haulers where they belong: in the healthcare spotlight.
If you’re ready to make a change in your health, visit www.powerofpatients.com and click “register” to get started.