Former adult film star Emily Willis is feared to have developed locked-in syndrome, but what is this very rare disorder?
In February, it was reported that Emily had been hospitalized and was in a grave condition.
In the weeks that followed, her father provided an update, stating that she was in a ‘vegetative state’.
Discussing 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 mentioned that she showed ‘some signs of responsiveness like eye tracking but is still unable to communicate’.
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’, according to the Cleveland Clinic.
While often linked to a stroke, cardiac arrest can also lead to brain injuries by affecting oxygen and blood flow to the brain, potentially resulting in LiS.
Elaborating on the condition and the experience of those who have it, Dr Nye explained: “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.”
Unfortunately, there is no cure for locked-in syndrome, meaning it can last for many years.
Nonetheless, those with LiS, while still conscious, can lead meaningful lives through modern technology that allows communication with loved ones using eye movements.
LiS may be incurable, but recovery is not impossible, as evidenced by Martin Pistorius.
“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 would like to support Emily in her challenging journey, you can contribute to her GoFundMe fundraiser.
As of now, more than $94,000 has been collected for her.