Charlotte Benign Essential Blepharospasm (BEB)

Greater Charlotte
Benign Essential Blepharospasm (BEB)
Support Group

The Greater Charlotte Benign Essential Blepharospasm (BEB) support group provides information and support for:

Those who have blepharospasm or other related facial motion disorder (such as Meige syndrome)
Those who care for/about those with these disorders.

The group typically meets twice a year (in the spring and fall), usually at the Charlotte Eye, Ear, Nose, and Throat (CEENTA) facility near SouthPark Mall.

This is a local group associated with the Benign Essential Blepharospasm Research Foundation (BEBRF), supporting their policies and procedures to further educate patients and their families.

Click for Facebook group

What is Benign Essential Blepharospasm (BEB)?

Benign = not life threatening (though it CAN be lifestyle altering!)
Essential = its cause is unknown
Blepharo- = eyelid
Spasm = uncontrolled muscle contraction

The term Blepharospasm by itself can encompass many types of eyelid spasms (including abnormal blinking, eyelid tics, or twitches). Benign Essential Blepharospasm is a form of dystonia (a neuromuscular disorder characterized by abnormal sustained involuntary muscle contractions/spasms).

Related ailments include:

Meige syndrome = a combination of two dystonias (BEB + oralmandibular dystonia, affecting the mouth and jaw)
Hemifacial spasm = a condition involving muscles on one side of the face, caused by irritation of the facial nerve (not a dystonia)

Blepharospasm is often misdiagnosed as other ailments. Often only by persistence can a correct diagnosis (and treatment) be found.

Resources:

Benign Essential Blepharospasm Research Foundation (BEBRF)
Blepharospasm Bulletin Board (where BEB patients and family members from around the world can support each other online)
Charlotte Eye, Ear, Nose, and Throat Associates (CEENTA)
(Note: Typically, CEENTA neuro-ophthalmologists actively participate in support group meetings. In addition, the CEENTA Optical Shop is a resource for obtaining FL-41 lenses, whose tint has been shown to be effective in reducing the symptoms of BEB.)
Allergan (providers of Botox®)
Dystonia Medical Research Foundation
National Eye Institute, Facts About Blepharospasm
Wikipedia article on Blepharospasm
SupportWorks Online (a Charlotte non-profit group that helps people find and form support groups and research medical information)

Disclaimer:

This page is intended to provide general information, not medical advice. Seek medical advice from your physician, ophthalmologist, neuro-ophthalmologist, and/or neurologist.