Capitol News

A recent study by Michigan State University sheds light on the challenges faced by individuals with epilepsy and other episodic disabilities in obtaining timely diagnoses. The research, led by Assistant Professor Megh Marathe, highlights how socioeconomic factors and the unpredictability of symptoms contribute to diagnostic delays for these conditions.

Epilepsy, a neurological disorder affecting over 3 million people in the United States and 50 million worldwide, is characterized by unpredictable seizures. According to Marathe, "Epilepsy has different symptoms that come and go, which makes it hard for doctors to identify using regular screening tools. People from low-income backgrounds and those whose seizures don’t show up on these tools often face the longest delays."

The study involved interviews with 25 individuals with epilepsy and 36 medical practitioners at a large Midwest hospital. Findings revealed that 52% of participants experienced delayed diagnoses, while 48% received quick diagnoses following their first seizure. Marathe notes that "quick diagnoses resembled progress narratives," whereas "delayed diagnoses resembled cyclical narratives" due to unresolved symptoms and ineffective medical encounters.

EEG tests are crucial for diagnosing epilepsy as they visualize brain activity. However, normal EEG results do not rule out epilepsy, posing a challenge when seizures are not captured during testing. As Marathe explains, "Abnormal EEGs indicate seizures and epilepsy, but normal EEGs don’t rule them out."

Most first-time seizure patients visit generalist healthcare settings where practitioners have limited training in recognizing non-typical seizures or indirect signs of epilepsy. This gap in expertise can lead to misdiagnoses or no diagnosis at all.

Marathe emphasizes the importance of understanding the broader context of patients' lives: “When diagnosing epilepsy, practitioners should attend to the confluence of class, race, gender, age, access to health care and social support that can all have impacts on how long it takes for a person to obtain a diagnosis.”

The study calls for improved training for medical professionals to recognize both visible signs and underlying conditions associated with episodic disabilities like epilepsy.