September 28, 2008
A MELBOURNE woman whose eyes clamp shut for three days at a time – then open up for the next three – has baffled specialists.
Natalie Adler, 21, has been locked in the extraordinary routine for four years.
Doctors believe Ms Adler may be the only person in the world with her condition.
“My eyes are closed for three days and then open for three days,” Ms Adler, of Caulfield South, said.
“Something happens overnight (on the third night). I go to bed and I can open my eyes, and then when I wake up the next day I can’t.
“Nobody knows why.”
Ms Adler has undergone hundreds of tests since her life dramatically changed in mid-year 11 at school.
“I woke one Sunday and my eyes were swollen. It was the day before an English exam,” she said.
After a sinus and staph infection “I just never got better”.
“My eyes started closing intermittently, really randomly, but within a few weeks they were closing for three days,” she said.
Experts from the Royal Eye and Ear Hospital said Ms Adler’s case was like no known other.
Associate professor Justin O’Day, head of the hospital’s neuro-ophthalmology unit, said: “Natalie’s a mystery.
“She’s a one-off and we don’t have a diagnosis.”
Dr O’Day said a condition called blepharospasm – random muscle spasms forcing the eyes closed – offered some point of reference.
But he said there was no medical explanation for the strict consistency of Ms Adler’s eye routine. He added: “It’s unusual to see somebody with this degree of spasming and eyelid closure, especially at this age.
“There is no known cause.”
The best-known treatment, Botox injections around the eyes, worked temporarily for Ms Adler.
For almost two years, her six-day eye cycle inexplicably changed to five-days open, one-day closed.
But Ms Adler, who also suffers unexplained fatigue and nausea, said Botox no longer worked for her.
During “closed-eye days”, Ms Adler’s eyes are completely shut, except for a small slit in her left eye.
On “open-eye days”, they function normally, though the left eyelid can droop.
Ms Adler crams as much as she can into good days, which are marked months ahead in her diary. But some things can’t be scheduled.
“On my 18th birthday, my eyes were closed, but on my 21st they were open, so I had a party,” she said.
A big footy fan, she watched the AFL Grand Final live for the first time in three years.
“Not being able to go to the football or seeing my friends as much is what I miss the most,” Ms Adler said. “It’s the general day-to-day things that I used to take for granted.”
Ms Adler’s parents, Fred and Lillian, said they were proud of the way their daughter handled her lot.
“Natalie’s always saying there are a lot of other people worse off than she is,” Mr Adler said.
Natalie’s next treatment will include electrical stimulation of the eyes, has not given up hope of a cure.
“The tests give me a glimmer of hope.”