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Local Blepharospasm Support Group
The Benign Essential Blepharospasm Foundation has a support group in the south/southwest suburbs for BEB and Meige patients.
The BEBRF South Chicagoland support group meets three times a year in the south/southwest suburbs to support patients with benign essential blepharospasm (BEB) and Meige syndrome. These are rare focal dystonias (localized movement disorders).
The volunteer, nonprofit Benign Essential Blepharospasm Research Foundation (BEBRF) was established in 1981 by a BEB patient out of her distress over a lack of interest, information, and treatment options for blepharospasm and Meige. Her prime objective was to find the cause, an effective treatment, and a cure for her disorders. There is at least one area support group in most states and Australia, Canada, and Puerto Rico. In 2014, the South Chicagoland group was started. Another Chicago area support group meets in the North Shore area.
BEB is a relatively rare disorder, affecting approximately 1 out of 20,000 people in the United States. Therefore, many people spend years going from doctor to doctor seeking a diagnosis effective treatment. The disorder has no cure.
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BEB may appear as frequent blinking, squinting of both eyes and spasms of eyelid closure, or simply difficulty in keeping the eyes open. The patient may experience apraxia of eyelid opening (difficulty in opening the eyelids without spasms). Sensitivity to light is often associated with the condition. Meige syndrome has, in addition to eyelid symptoms, co-existing involuntary movements and spasms in the lower face, possibly including the mouth, tongue, throat, and neck.
The support group helps to inform those new to the disorder, as well as offering a forum for BEB and Meige veterans to share information. It is helpful to know one is not alone in dealing with the often disabling and challenging-to-control symptoms. The support group meetings are generally held in Flossmoor. The next meeting is scheduled for March 2016.
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Individuals interested in obtaining more information about these disorders or in attending the local support group meeting can contact the BEBRF Foundation, which is headquartered in Beaumont, TX. Their website is www.blepharospasm.org. The telephone number is 409-832-0788, and they can be e-mailed at bebrf@blepharospasm.org. They also have a Facebook page.
