Benign Essential Blepharospasm (BEB) Week

Benign Essential Blepharospasm (BEB) Week

May 15th - 21st 2011

"My Grandma Wears Funky Glasses  and I helped pick them out." ..... Joseph

Hopefully this post will help raise awareness of this disorder which in turn will help in raising funds for research into the cause to help find a cure.

Currently the most common form of treatment is periodic injections of botulinum toxin.

This movement disorder of the eyelids affects an estimated 5 out of every 100000 people, mostly women, with the average age of onset being 56. 

"The term blepharospasm ['blef-a-ro-spaz-m] can be applied to a forced, sustained, and involuntary closure of the eyelids. It stems from a number of causes, beginning with dry eyes, and, may progress to a state where the person is "legally blind". The blepharospasm referred to here is officially called Benign Essential Blepharospasm (BEB). "Benign" indicates the condition is not life threatening, and "essential" is a medical term meaning "of unknown cause"."      www.blepharospasm.ca 

Yes Grandma Wears Funky Glasses ... not to be cool or to be told they look like Elton John's but because Grandma has a very rare eye condition, called Benign Essential Blepharospasm (BEB).

A few Years ago three of my young grandsons were called upon to help their grandmother pick out her new glasses at the optometrist's office. They had their job cut out for them

There were all shapes and sizes. some were big and round, some were oval, some old fashioned and some very modern. I wanted something that would reflect on me, my personality, my perspective on life. They had to be different and yet distinguished, Something that would help portray an image of who I was.

Given the opportunity, my three grandsons had their own visions of what I should be wearing. Something a little bit out of the ordinary. Something that reflected how they saw me not how I thought the world should see me.

Knowing I required a special tinted prescription for a very rare eye condition, called Benign Essential Blepharospasm (BEB), they felt something a little bit funky was in order. What they helped choose has raised a few eyebrows and questions from my generation and received complimentary comments from the younger generation.