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What is ‘locked-in syndrome?’ The rare disorder that plagues porn star Emily Willis after ketamine addiction

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Former adult entertainment star Emily Willis is believed to be suffering from a terrifying brain disorder that leaves people ‘trapped’ in their own bodies. 

While in a rehab center for ketamine addiction, the 25-year-old suffered a cardiac arrest that left her unconscious and needing CPR for over 30 minutes. 

Despite regaining consciousness, she remains unable to speak and can only track objects with her eyes, which doctors call ‘locked-in syndrome’ (LiS). 

In Ms Willis’ cases, doctors believe the extended lack of oxygen to her brain damaged her brainstem, which connects the brain to the spinal cord and controls basic functions like breathing, walking, talking, and chewing. 

While there is no cure for the disorder, patients can gradually regain the ability to move and speak with extensive physical therapy, though a full recovery is near impossible. 

LiS occurs due to damage to a region of the brainstem called the pons. 

Found in the middle of the brainstem, the pons connects the brain and spinal cord and helps nerves in the face and body communicate with the brain.

Fewer than 1,000 Americans and between 30 and 500 Brits have been diagnosed with LiS.  

Adult star Emily Willis has been left 'permanently disabled' after seeking treatment for a serious drug addiction at a Malibu rehab center, according to a recent lawsuit

Adult star Emily Willis has been left ‘permanently disabled’ after seeking treatment for a serious drug addiction at a Malibu rehab center, according to a recent lawsuit

Stroke is the most common cause, along with traumatic brain injuries. 

Ms Willis checked into a rehab center last year for an addiction to ketamine, a powerful anesthetic turned party drug but her health deterio

While in the facility, her health rapidly deteriorated as she suffered aches, tremors, spasms, and weakness, according to court documents. 

In February 2024, Ms Willis was discovered unconscious, and she spent 30 to 40 minutes without a heartbeat before being brought back.

Though she is conscious, she is in a vegetative state and unable to move or speak.

Doctors believe the extended lack of oxygen to her brain damaged her brainstem and disrupted blood flow to the area. 

Ms Willis’ family is now suing Summit Malibu and its parent company Malibu Lighthouse Treatment Centers, LLC for ‘abuse of a dependent adult, professional negligence, negligence and fraudulent business practices.’

LiS prevents basic functions like speaking, chewing, swallowing, and making facial expressions. 

The damage is most often caused by a stroke or traumatic brain injury, though other neurological conditions like amyotrophic lateral sclerosis (ALS) and multiple sclerosis (MS) could cause LiS due to the degeneration of neurons around the brainstem. 

There are three forms of LiS: classical, incomplete, and total immobility. 

In classical form, the most common type, patients are completely paralyzed but can move their eyes normally and blink. They also have their full cognitive abilities and can hear normally.

Incomplete form is similar, though patients have some sensation and movement. Patients with this form also might be able to feel some level of pain. 

In total immobility LiS, patients are completely paralyzed and can no longer move their eyes, though their cognitive abilities are still in tact. 

Oli Coppock, from the UK, was an active gym-goer and DJ until May this year, when he developed locked-in syndrome

Oli Coppock, from the UK, was an active gym-goer and DJ until May this year, when he developed locked-in syndrome

Willis, who starred in over 700 films throughout her career, remains in a semi-conscious state after suffering cardiac arrest at the facility in early 2024

Willis, who starred in over 700 films throughout her career, remains in a semi-conscious state after suffering cardiac arrest at the facility in early 2024

LiS is often misdiagnosed, as many doctors think patients are in a coma before realizing they are still conscious. 

Experts estimate fewer than 1,000 Americans have been diagnosed with LiS, and anywhere from 30 to 500 Brits have the condition. 

MRI and CT scans can help determine the extent of the damage to the brainstem, and an electroencephalogram (EEG) can be used to measure electrical activity in the brain. 

Doctors may also perform an evoked potential test to diagnose LiS. This involves placing electrodes on certain parts of the scalp to measure brain and nerve responses.  

There is no cure or specific treatment for LiS, though patients may rely on supportive therapies like a tracheotomy to help with breathing and feeding tubes for nutrition. 

In some cases, physical and speech therapy can help patients slowly regain their abilities. 

However, ‘a complete recovery is highly unlikely,’ according to Cleveland Clinic. 

[Notigroup Newsroom in collaboration with other media outlets, with information from the following sources]

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