In addition to living with vision loss, are you experiencing intense, hard-to-control hunger and obesity due to Bardet-Biedl syndrome (BBS)?
Intense, hard-to-control hunger and obesity due to BBS are unique and require management. There are new resources, including an approved treatment, available for individuals living with hard to control hunger and obesity due to BBS.
Connect to educational resources about BBS by completing the short questionnaire.
The facts on BBS and vision loss
- A majority of individuals living with BBS display rod-cone dystrophy, which presents as atypical retinitis pigmentosa with early macular involvement
- Rod-cone dystrophy is one of the most common features of BBS and often leads to a clinical diagnosis
- Visual impairment symptoms generally appear in the first decade of life and often lead to legal blindness by teens/early adulthood
- Progressive vision loss may manifest initially as night blindness followed by photophobia and finally a loss of central/color vision
Understanding some common features of Bardet-Biedl Syndrome
Visual impairment
Majority of individuals living with BBS experience vision impairment at some point in their life. Onset of rod-cone dystrophy presenting as atypical retinitis pigmentosa usually occurs between 5 and 10 years of age.
Hyperphagia
This is a feeling of intense, hard-to-control hunger and is characterized by a preoccupation with food and excessive food-seeking behavior. The intense, hard-to-control hunger can affect sleep, mood, school or work, recreational activities, and relationships with family and friends.
Obesity
Individuals living with BBS may experience severe, early-onset obesity. Rapid weight gain occurs in the first years of life, typically before age 5.
Extra fingers and toes
Many individuals living with BBS are born with extra fingers and/or toes. These extra fingers and/or toes are typically surgically removed during the first years of life.
Kidney problems
Individuals living with BBS may experience kidney problems involving cystic tubular disease and anatomical malformations. Renal disease is often detectable before the age of 10, and in some cases before age 1.
Learning disabilities
Many individuals living with BBS experience learning disabilities, speech delay, or developmental delay.
You are not alone. A community and a treatment for obesity in individuals living with BBS are out there – find out more today.
The majority of individuals living with BBS experience intense, hard-to-control hunger contributing to obesity. There is an approved treatment that significantly reduced measures of weight and hunger in clinical trials in people living with BBS. Take the questionnaire to connect to educational resources.
Have additional questions? Get connected to an AmbitCare Ambassador today.
Call us at 1-877-584-8995 or email us at info@ambitinc.com.
Our hours of operation are Monday-Friday, 9-5pm ET. An AmbitCare Ambassador will typically respond within 1-2 business days.
*Please note that while AmbitCare Ambassadors can help you better understand what resources are available for you or your loved ones, they are not licensed medical providers and thus can neither diagnose any disease or disorder nor endorse or recommend any specific medical treatments.
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Disclaimer
Please note that AmbitCare provides this information for the benefit of the rare disease community. AmbitCare is not a medical provider nor a health care facility. AmbitCare can neither diagnose any disease or disorder nor endorse or recommend any specific medical treatments. Individuals must rely on the personal and individualized medical advice of their qualified health care professionals before seeking any information related to their particular diagnosis, cure, or treatment of a condition or disorder.