National Center for Advancing and Translational Sciences Genetic and Rare Diseases Information Center, a program of the National Center for Advancing and Translational Sciences

Benign essential blepharospasm


Other Names:
BEB; OBSOLETE: Benign essential blepharospasm; Primary blepharospasm; BEB; OBSOLETE: Benign essential blepharospasm; Primary blepharospasm; Blepharospasm See More
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Benign essential blepharospasm (BEB) is a progressive neurological disorder characterized by abnormal blinking or spasms of the eyelids. It is a form of dystonia, a group of movement disorders involving uncontrolled tensing of the muscles (contractions), rhythmic shaking (tremors), and other involuntary movements.[1][2] BEB occurs in both men and women, although it is especially common in middle-aged women.[1]

Initial symptoms include an increased frequency of blinking, dry eyes, and eye irritation. As the condition progresses, spasms of the muscles surrounding the eyes cause involuntary winking or squinting and increasing difficulty keeping eyes open, which can lead to vision impairment. In more than half of all people with BEB, the symptoms affect other facial muscles and muscles in other areas of the body.[3][1][2] When people with BEB also experience involuntary muscle spasms affecting the tongue and jaw, this is known as Meige syndrome.[2] The cause of BEB is unknown; however, some cases appear to run through families.[1] Although there is no cure for BEB, symptoms can be treated using various methods including botulinum toxin injections.[3] 
Last updated: 11/2/2016

This table lists symptoms that people with this disease may have. For most diseases, symptoms will vary from person to person. People with the same disease may not have all the symptoms listed. This information comes from a database called the Human Phenotype Ontology (HPO) . The HPO collects information on symptoms that have been described in medical resources. The HPO is updated regularly. Use the HPO ID to access more in-depth information about a symptom.

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Medical Terms Other Names
Learn More:
HPO ID
Percent of people who have these symptoms is not available through HPO
Autosomal dominant inheritance 0000006
Blepharospasm
Eyelid spasm
Eyelid twitching
Involuntary closure of eyelid
Spontaneous closure of eyelid
[ more ] 		0000643
Middle age onset 0003596
Sporadic
No previous family history
0003745
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Last updated: 7/1/2020

Making a diagnosis for a genetic or rare disease can often be challenging. Healthcare professionals typically look at a person’s medical history, symptoms, physical exam, and laboratory test results in order to make a diagnosis. The following resources provide information relating to diagnosis and testing for this condition. If you have questions about getting a diagnosis, you should contact a healthcare professional.

Testing Resources

  • The Genetic Testing Registry (GTR) provides information about the genetic tests for this condition. The intended audience for the GTR is health care providers and researchers. Patients and consumers with specific questions about a genetic test should contact a health care provider or a genetics professional.

FDA-Approved Treatments

The medication(s) listed below have been approved by the Food and Drug Administration (FDA) as orphan products for treatment of this condition. Learn more orphan products.

  • Botulinum toxin type A (Brand name: Botox) - Manufactured by Allergan, Inc.
    FDA-approved indication: Treatment of cervical dystonia in adults to decrease the severity of abnormal head position and neck pain associated with cervical dystonia. Treatment of blepharospasm or strabismus associated with dystonia in adults (patients 12 years of age and above).
    National Library of Medicine Drug Information Portal
    Medline Plus Health Information
It is estimated that there are at least 50,000 cases of BEB in the United States, with up to 2000 new cases diagnosed annually.[4][5] It is estimated that 5 in 100,000 individuals have BEB.[4][6]
Last updated: 11/2/2016

If you need medical advice, you can look for doctors or other healthcare professionals who have experience with this disease. You may find these specialists through advocacy organizations, clinical trials, or articles published in medical journals. You may also want to contact a university or tertiary medical center in your area, because these centers tend to see more complex cases and have the latest technology and treatments.

If you can’t find a specialist in your local area, try contacting national or international specialists. They may be able to refer you to someone they know through conferences or research efforts. Some specialists may be willing to consult with you or your local doctors over the phone or by email if you can't travel to them for care.

You can find more tips in our guide, How to Find a Disease Specialist. We also encourage you to explore the rest of this page to find resources that can help you find specialists.

Healthcare Resources

Research helps us better understand diseases and can lead to advances in diagnosis and treatment. This section provides resources to help you learn about medical research and ways to get involved.

Clinical Research Resources

  • ClinicalTrials.gov lists trials that are related to Benign essential blepharospasm. Click on the link to go to ClinicalTrials.gov to read descriptions of these studies.

    Please note: Studies listed on the ClinicalTrials.gov website are listed for informational purposes only; being listed does not reflect an endorsement by GARD or the NIH. We strongly recommend that you talk with a trusted healthcare provider before choosing to participate in any clinical study.

Support and advocacy groups can help you connect with other patients and families, and they can provide valuable services. Many develop patient-centered information and are the driving force behind research for better treatments and possible cures. They can direct you to research, resources, and services. Many organizations also have experts who serve as medical advisors or provide lists of doctors/clinics. Visit the group’s website or contact them to learn about the services they offer. Inclusion on this list is not an endorsement by GARD.

Organizations Supporting this Disease

These resources provide more information about this condition or associated symptoms. The in-depth resources contain medical and scientific language that may be hard to understand. You may want to review these resources with a medical professional.

Where to Start

  • Genetics Home Reference (GHR) contains information on Benign essential blepharospasm. This website is maintained by the National Library of Medicine.
  • The National Eye Institute (NEI) was established by Congress in 1968 to protect and prolong the vision of the American people. Click on the link to view information on this topic. 
  • The National Institute of Neurological Disorders and Stroke (NINDS) collects and disseminates research information related to neurological disorders. Click on the link to view information on this topic.
  • The National Organization for Rare Disorders (NORD) has a report for patients and families about this condition. NORD is a patient advocacy organization for individuals with rare diseases and the organizations that serve them.

In-Depth Information

  • Medscape Reference provides information on this topic. You may need to register to view the medical textbook, but registration is free.
  • The Monarch Initiative brings together data about this condition from humans and other species to help physicians and biomedical researchers. Monarch’s tools are designed to make it easier to compare the signs and symptoms (phenotypes) of different diseases and discover common features. This initiative is a collaboration between several academic institutions across the world and is funded by the National Institutes of Health. Visit the website to explore the biology of this condition.
  • Online Mendelian Inheritance in Man (OMIM) is a catalog of human genes and genetic disorders. Each entry has a summary of related medical articles. It is meant for health care professionals and researchers. OMIM is maintained by Johns Hopkins University School of Medicine. 
  • Orphanet is a European reference portal for information on rare diseases and orphan drugs. Access to this database is free of charge.
  • PubMed is a searchable database of medical literature and lists journal articles that discuss Benign essential blepharospasm. Click on the link to view a sample search on this topic.

Questions sent to GARD may be posted here if the information could be helpful to others. We remove all identifying information when posting a question to protect your privacy. If you do not want your question posted, please let us know. Submit a new question

  • Approximately how many people in the United States have benign essential blepharospasm? See answer


  1. Hallett M. Blepharospasm, Benign Essential. National Organization for Rare Disorders (NORD). 2016; https://rarediseases.org/rare-diseases/benign-essential-blepharospasm/. Accessed 11/2/2016.
  2. benign essential blepharospasm. Genetics Home Reference. May 2010; https://ghr.nlm.nih.gov/condition/benign-essential-blepharospasm. Accessed 11/2/2016.
  3. NINDS Benign Essential Blepharospasm Information Page. National Institute of Neurological Disorders and Stroke (NINDS). January 14, 2013; http://www.ninds.nih.gov/disorders/blepharospasm/blepharospasm.htm. Accessed 11/2/2016.
  4. Graham RH. Blepharospasm, Benign Essential. Medscape. May 16, 2016; http://emedicine.medscape.com/article/1212176-overview. Accessed 11/2/2016.
  5. Adams WH, Digre KB, Patel BC, Anderson RL, Warner JE, Katz BJ . Am J Ophthalmol. 2006; http://www.ncbi.nlm.nih.gov/pubmed/16815254. Accessed 7/22/2009.
  6. Benign Essential Blepharospasm (BEB). North American Neuro-Ophthalmology Society. http://www.nanosweb.org/patient_info/brochures/beb.asp. Accessed 7/22/2009.