Bardet-Biedl syndrome

How can we manage the behavioral problems associated with Bardet-Biedl syndrome?

Managing the behavior problems of Bardet-Biedl syndrome depends on which issues are present in each person. Children with this syndrome should have a developmental assessment or educational evaluation to develop a personalized plan. Early intervention is important so that children reach their highest potential.

Last updated on 05-01-20

Can men with Bardet-Biedl syndrome father children?

Most affected males produce reduced amounts of sex hormones and are unable to father biological children. However, at least two men with Bardet-Biedl syndrome are known to have fathered children.

Last updated on 05-01-20

Are behavioral problems common in people with Bardet-Biedl syndrome?

Behavioral problems have been reported in some people with Bardet-Biedl syndrome (BBS). The types of problems vary for each person but may include:

  • Depression
  • Throwing temper tantrums
  • Misreading social cues like body language and expressions
  • Obsessive behavior
  • Not paying attention
  • Preferring a strict routine

Some children have features of autism, but they usually do not meet the criteria for diagnosis.

Last updated on 05-01-20

How might Bardet-Biedl syndrome be treated?

There is no cure for Bardet-Biedl syndrome. Treatment generally focuses on the specific signs and symptoms in each individual:

  • While there is no therapy for the progressive vision loss, early evaluation by a specialist can help to provide vision aids and mobility training. Additionally, education of affected children should include planning for future blindness.
  • Management of obesity may include education, diet, exercise, and behavioral therapies beginning at an early age. Complications of obesity such as abnormally high cholesterol and diabetes mellitus are usually treated as they are in the general population.
  • Management of intellectual disability includes early intervention, special education and speech therapy as needed. Many affected adults are able to develop independent living skills.
  • Although kidney transplants have been successful, the immunosuppressants used after a transplant may contribute to obesity. Affected individuals may also need surgery for polydactyly (extra fingers and/or toes) or genital abnormalities.
  • As children approach puberty, hormone levels should be monitored to determine if hormone replacement therapy is necessary. Additionally, it should not be assumed that affected individuals are infertile - so contraception advice should be offered.

Last updated on 05-01-20

Name: Foundation Fighting Blindness 7168 Columbia Gateway Drive, Suite 100
Columbia, MD, 21046, United States
Phone: +1-410-423-0600 TTY: 1-800-683-5551 Toll Free: 1-800-683-5555 Email: Url:
Name: American Foundation for the Blind 1401 South Clark Street Suite 730
Arlington, VA, 22202, United States
Phone: 212-502-7600 Toll Free: 800-232-5463 Fax : 888-545-8331 Email: Url:
Name: Bardet-Biedl Syndrome UK BBS UK 10 High Cross Road Roderston, Newport NP 10 9AD
United Kingdom
Email: Url:
Name: Bardet-Biedl Syndrome Foundation Url:
Hufnagel RB, Amo G, Hein ND, Hersheson J, Prasad M, Anderson Y, et al.. Neuropathy target esterase impairments cause Oliver-McFarlane and Laurence-Moon syndromes J Med Genet. February, 2015; 52(2). 85-94. Reference Link

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