OCT. 9 is PANS/PANDAS Awareness Day

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Contributed By
Jessica Gavin

Oct. 9 serves as a reminder of the 1 in 200 children who suffer tremendous neuropsychiatric symptoms following immune insults ranging from bacterial infections such as strep and lyme, to environmental and/or food allergies. PANS stands for Pediatric Acute-Onset Neuropsychiatric Syndrome. PANDAS, a subset of PANS, is theorized to be the result of an autoimmune attack on the brain reflected in its name, Pediatric Autoimmune Neuropsychiatric Disorder Associated with Streptococcus. While PANS and PANDAS both have pediatric in their name, some patients report that they remain symptomatic even after they age out of adolescence. 

PANS is a clinical diagnosis that makes identifying which patient suffers especially challenging for physicians. Patients may exhibit a broad range of symptoms including, but not limited to, a mix of OCD, tics, sleep disturbances, sensory abnormalities, emotional lability, urinary incontinence and severe anxiety.

Families and brave physicians face overwhelming challenges getting patients the treatment they so desperately need in order to stabilize their condition. This makes Oct. 9th awareness a critical part of PANS advocacy efforts. Just eight states have mandated insurance coverage for patients with PANS and some states, such as Florida, refuse to even recognize the day despite fierce legislative advocacy efforts. There are incredible gaps of knowledge among medical providers. Fortunately, the tides are changing as a few progressive university hospitals such as Stanford, Virginia Commonwealth University, University of Arizona and Mass General now house multi-center treatment clinics. 

PANS awareness demands honest reflection of the harsh realities of the disorder; with no clear biomarkers, coupled with the ongoing stigma around mental health, families suffer traumatic experiences due to skeptical physicians, unconvinced family and ineffective and misinformed legislatures assuming the child’s symptoms are “all in their head”, or worse, an exaggeration from unstable parents. 

In a world where the insurance industry increasingly dictates how physicians practice medicine, it can be near impossible for some families to get their children immune-modulating treatments and antibiotic therapies which are the mainstay of treatment.

New Found Hope

Fortunately for these families, the international crisis born from the COVID pandemic has made it increasingly difficult to ignore the immense influence the immune system has on the brain.   According to one peer-reviewed research publication in Frontiers Journal, “COVID has the potential to cause nervous system damage. And the virus itself plays a possible role in the development of acute psychiatric symptoms and long-term neuropsychiatric sequelae of COVID-19. The brain pathologies associated with COVID-19 infection are likely to have a long-term impact on cognitive processes.”

https://www.frontiersin.org/articles/10.3389/fpsyg.2021.577529/full

Most puzzling is the fact that these types of research studies are only now coming underway. It has been six years since the extraordinary discovery by Johnathan Kipnis, PhD, and then professor at the University of Virginia’s Department of Neuroscience overturned decades of what was once thought of as scientific “fact”, when he definitively proved the brain was directly connected to the immune system through lymphatic vessels previously thought not to exist.

The historical belief that the central nervous system was an immune privileged organ was built upon the idea that the blood brain barrier resulted in a physical disconnect with the immune system. However, for families who have been beating the drum for years, it’s been their hope that the conclusive work happening in the lab would have made its way to the doctor’s office over a half a decade later. While the post-pandemic world has marveled at the idea that viruses could cause both short- and long-term psychiatric symptoms, this is no surprise to the tens of thousands of families and few physicians who have been dealing with the crippling effects of PANS for decades. While researchers everywhere work to better understand these neuroimmune reactions in order to mitigate the devastating consequences of long haulers, the overlap with PANS gives families hope that the work being done on COVID-19 may propel PANS research initiatives forward.

Despite much more work needing to be done, public awareness has increased significantly in recent years, thanks to non-profits and parent advocacy efforts working diligently to change the landscape. One such charity, the Neuroimmune Foundation, has launched the largest physician education effort to date, educating over 2,000 physicians in 2020 alone through a series of Continuing Medical Education (CME) activities and their annual Inflammatory Brain Disorders conference.

The loss of innocent childhoods of the early PANS pioneers due to a lack of awareness among physicians and families need not be in vain. We can learn from our failures and forge forward on a path that emphasizes awareness and understanding but prioritizes action. Let’s look at the plethora of research highlighting the interconnectedness of the gut, brain and immune system and urge physicians and hospital systems to bring it to the bedside now. There is no time to spare. The time is now to provide suffering families with the resources they so desperately need.

To learn more about PANS, visit neuroimmune.org.

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