What is locked in syndrome? Adult film star Emily Willis diagnosed with rare disorder after rehab incident

Emily Willis, a former adult film star, has been diagnosed with locked-in syndrome (LIS) after experiencing a medical emergency at a Malibu rehabilitation center.

The 25-year-old actress was being treated for ketamine addiction at the Los Angeles area facility Summit Malibu when she suffered cardiac arrest, which left her with catastrophic brain damage. Now she is semi-conscious, unable to move or speak, a state that experts say is related to LIS.

According to NINDS, locked-in syndrome is a rare neurological condition in which a person loses almost all voluntary muscle control but is fully conscious and aware. People with this condition typically cannot speak move or express themselves physically even though their cognitive functioning is not affected.

In many cases, the patients can still move their eyes, which becomes their main way of communicating. This catastrophic condition is usually the result of damage to a part of the brainstem, specifically an area known as the pons.

Locked-in syndrome cannot be properly diagnosed since patients are frequently misdiagnosed as being in a coma or a vegetative state. Fortunately, advanced medical imaging techniques like MRI and CT scans may help to discern damage to the brainstem.

How did Emily Willis develop locked in syndrome?

Emily Willis’ medical addition is a side effect of a cardiac arrest that she experienced at Summit Malibu in February 2024. A nurse practitioner found her unresponsive, immediately performed CPR, and called the authorities, according to a lawsuit filed by her family.

Paramedics attempted to revive her for 30 to 40 minutes before getting her heart to beat again. However, the extended deprivation of oxygen to her brain caused catastrophic neurological damage, and she was left in a vegetative state.

Medical experts stated that the extended period of oxygen deprivation may have harmed her brainstem, causing symptoms consistent with locked-in syndrome. Although she has since regained some consciousness and is able to track movements with her eyes and respond to conversations, she still cannot speak or move.

Willis’ family has sued Summit Malibu and its parent company, alleging neglect and insufficient medical care. The suit alleges that her declining health was ignored for days leading up to the cardiac arrest.

Her lawyer, James A. Morris Jr, criticized the facility for not adhering to proper medical protocols. He stated:

"Had the staff followed standard medical procedures, Emily would have had the opportunity to regain control of her life,"

The lawsuit seeks not just justice for Emily Willis, but to bring awareness to the need for better standards in addiction treatment centers.