Locked-in syndrome explained as update on Emily Willis' condition is given

Former adult star Emily Willis is suspected to have locked-in syndrome, but what exactly is the extremely rare disorder?

Back in February, news broke that Emily had been hospitalized and was in a serious condition.

In the weeks that followed, the adult industry star's father gave an update on her condition and described her as being in a 'vegetative state'.

Speaking further on her condition, Dr Gareth Nye, Programme Lead for Medical Science at the University of Chester, told the Daily Star: "What we are seeing here is the damage to the brain following a lack of oxygen after the cardiac arrest.

"It is encouraging to see that she seems to be conscious, recognises people, and can track with her eyes. However, it is highly likely she is suffering from a condition called locked-in syndrome."

As of May, Emily's family said that she was able to 'some signs of responsiveness like eye tracking but is still unable to communicate'.

What is locked-in syndrome?

Locked-in syndrome (LiS) is described as 'a rare and serious neurological disorder that happens when a part of your brainstem is damaged, usually from a stroke', as per Cleveland Clinic.

While commonly associated with a stroke, it has been found that a cardiac arrest can cause brain injuries as it affects the amount of oxygen and blood flow to the brain, thus potentially leading to LiS.

Emily Willis was hospitalized earlier this year after a suspected cardiac arrest (emilywillisx3/Instagram)

Giving further explanation as to what the condition is and what its like to have, Dr Nye said: "Locked-in syndrome is essentially where a patient is aware of their surroundings and have full consciousness but cannot move or communicate verbally due to complete paralysis of nearly all voluntary muscles in the body, except for vertical eye movements and blinking.

"Some patients do retain some facial muscle movement and may retain some sensation in their limbs but crucially have no movement at all below the neck."

What are the chances of recovering from LiS?

Sadly there is no cure for locked-in syndrome, meaning those who develop it might have it for years on end.

However, as those with LiS are still conscious, they're still able to lead meaningful lives with the help of modern day technology that helps them to communicate with their loved ones through eye movements.

LiS might be incurable, but it's not impossible to recover from it - Martin Pistorius being a prime example.

Adult film star Emily Willis pictured in January 2023 (Matt Winkelmeyer/Getty Images)

"The numbers vary depending on the study but full recovery can be seen in about 1/20 patients," a doctor explained.

"Best prognosis in people who have locked-in syndrome is from more reversible causes, such as, infection, demyelination or nervous system disorders, or trauma vs other less reversible reasons like stroke or brain hemorrhages (vascular reasons).

"Younger age has a better outlook, and aggressive physical rehabilitation as soon as possible with physical, occupational, and speech therapy helps with recovery."

If you or anyone you would like to support the adult star in her incredibly challenging road ahead, you can donate to her GoFundMe fundraiser.

At the time of writing, over $94,000 has been raised for her.