Ed Yeates ReportingImagine your eyelids suddenly closing and not opening again. People from around the globe, who have this little known disorder, have come to Salt Lake to share some bizarre stories and talk about treatments.
Imagine this scary scenario. While you're driving, your eyelids suddenly close without warning. You pull off the side of the road. You don't know where you are. And when you try to open the eyelids, they won't open. That's what happened to Evelyn Larson, a Utah real estate agent. She pulled off the road and called her daughter by touch feeling a single call button on her cell phone.
Evelyn Larson: "I said you have got to come and get me. I can't open my eyes to drive. She said, 'Okay mom, I'll be there as fast as I can,' - gets a little emotional sometimes."
A doctor told Eveyln she needed sunglasses, that her eyes were dry or overly sensitive to light. Others, like Anita Croce from Ohio, were told they had a psychiatric disorder. The truth is Evelyn, Anita and more than two hundred others who've come to this conference actually have a condition called Blepharospasm.
Anita Croce: "The last six months prior to being diagnosed, I was totally blinded where I couldn't push the eyelids open, even with my fingers."
Blepharospasm may afflict one or both eyes. A cousin disorder called Meige Syndrome can also cause disfiguring facial spasms.
Anita Croce: "I must say I thought I was dying because the pain was so severe. And if you can imagine a Charlie horse continually going on in your leg - going on in the eye."
Bradley Katz, M.D., PhD., University of Utah Moran Eye Center: "This is a movement disorder similar to Parkinson's disease, which a lot of people are familiar with, and it's neurologic disease. It's due to a problem with a specific part of the brain."
Dr. Bradley Katz from the University of Utah Moran Eye Center says what causes the brain to react this way is unknown, but the condition is now treatable.
Dr. Katz: "I would say that is more than 90 percent. There are certainly some people who have intractable spasms that have been resistant to therapy, but the vast majority of patients get good relief from current medications that are available."
Therapy mostly includes botulism toxin or, in severe cases, some minor surgery.
Evelyn and Anita have been successfully treated and they're here to hear the latest research on this rare disorder.