The disregard for encephalitis despite symptoms, coupled with low confidence in recognizing the condition, underscores the urgent need for medical training.

A new survey commissioned by Encephalitis International, the peak global body for encephalitis, reveals that Filipino emergency medical professionals often overlook encephalitis, a life-threatening neurological condition characterized by brain inflammation, despite the presence of common symptoms. Survey results showed that over half (54%) of local respondents did not consider infectious encephalitis and three-quarters (74%) did not consider autoimmune encephalitis as a diagnosis when presented with a list of accepted symptoms for each condition. The survey findings are released in line with World Encephalitis Day on February 22, 2024.

Moreover, despite encephalitis leading to death in up to 40% of cases, 66% of the respondents did not consider death as a potential patient outcome resulting from delayed recognition and treatment.

“In the wake of these alarming survey findings, it is clear that much more must be done to bridge the gap in encephalitis awareness and expertise. Encephalitis International is determined to increase this awareness among medical professionals through the development of globally accessible training programs that will provide the tools for them to recognize better and treat encephalitis. Of course, we cannot do this alone and will continue to work alongside international entities, such as the World Health Organization, to elevate encephalitis as a global health priority,” shared Dr. Ava Eason, Chief Executive of Encephalitis International.

The condition can happen to individuals of any age, sex, and ethnicity, with symptoms varying depending on the type. Symptoms of infectious encephalitis encompass altered consciousness, behavioral changes, fever, and headaches, while autoimmune encephalitis presents with memory issues, psychiatric symptoms, altered consciousness, and personality changes.

With the risk of death or permanent brain impairment when the disease strikes, first responders are essential in promptly considering encephalitis during health emergencies to mitigate the worst-case patient outcomes.

Misdiagnosis in patients leads to worse patient outcomes

The survey results reveal the reality for encephalitis patients in the country. Roschelle Del Rosario, a caregiver based in Bulacan and mother to a 23-year-old patient named Alex, shared their struggle with his rapid symptom progression despite medical intervention. Initially experiencing insomnia, hallucinations, agitation, personality changes, appetite loss, and seizures, Alex was misdiagnosed with bipolar disorder. However, a second opinion in May 2023 revealed autoimmune encephalitis.

But the diagnosis was just the beginning. Alex’s health rapidly declined, leading to a four-and-a-half-month coma following the misdiagnosis. Roschelle highlighted the extensive research required into treatment options., which due to limited local resources, is largely dependent on international organizations like Encephalitis International, which is committed to funding research that aims to advance recognition, diagnosis, and treatment of the condition as well as rehabilitation and quality of life of all people affected and their families.

“Alex had his whole life ahead of him as a graduating college student and at the top of his class when his symptoms appeared. Today, he’s a fighter battling encephalitis. He’s overcome his unconscious state and is even able to use his mobile phone again after losing his cognitive and motor skills due to the disease. Eight months into this journey, he still faces significant challenges like hallucinations and memory loss. Sometimes, you’ll talk to him and the next second, he’ll ask who you are. It’s a tough road, but we still consider ourselves fortunate because, even though treating encephalitis in the country is difficult, we’ve found dedicated professionals who are willing to help and learn more about this disease so Alex can regain his health and have a chance at a normal life again,” shared Del Rosario.

Supporting emergency medical professionals with training for diagnosis

Further survey results found that only (35%) a third of local emergency medical professionals surveyed strongly agreed that their training had given them the confidence to recognize encephalitis. More than three-quarters (79%) somewhat or strongly agreed that they would benefit from more training.

Dr. Ferron Ocampo, an Adult Neurology Fellow of the Philippine Neurological Association and an advocate for encephalitis awareness, recognizes the challenges regarding the lack of training in encephalitis recognition and management in the country due to its rarity. Priority in resource allocation, including education and training, is given to more common conditions such as cardiovascular diseases and cancer. However, Dr. Ocampo stresses the importance of advocating for encephalitis awareness because this condition needs immediate attention, as delayed diagnosis can lead to worsening of the patient’s condition and serious consequences if not treated promptly.

“Encephalitis is a neurological emergency that can have devastating consequences if not diagnosed and treated promptly. However, not all medical professionals are aware of the symptoms and are confident in managing them. As we celebrate World Encephalitis Day, various international and local stakeholders should collaborate to prioritize providing training and resources to medical professionals worldwide to enhance encephalitis detection, diagnosis, and treatment,” Dr. Ocampo shared.

In line with this urgent need for education, Encephalitis International is launching its largest fundraiser yet, “Don’t Delay. Give Today.” This initiative aims to promote early recognition and treatment to prevent death and disability from encephalitis by developing accessible, accredited training modules to provide more robust information and training on encephalitis. Emergency medical professionals in the Philippines and globally can access training opportunities by signing up for free professional membership.