Living with Bardet-Biedl Syndrome

Stories, Support, and Resources for Everyday Life

Living with Bardet-Biedl Syndrome (BBS) presents daily challenges, but with the right support, resources, and mindset, individuals and families can build fulfilling, empowered lives. While BBS is a lifelong condition, many people live independently, pursue education and careers, and become strong advocates within their communities.

Adjusting to Vision Loss

Vision changes often begin in early childhood and progress over time. Adapting to vision loss can be emotionally and logistically challenging, but support is available:

Orientation and mobility training
Assistive technology (screen readers, magnifiers, Braille devices)
Vision rehabilitation services and organizations

Early intervention and ongoing support are key to helping individuals maintain independence as their vision changes.

Creating a Supportive Environment

Families play a crucial role in supporting someone with BBS. Here are a few tips:

Encourage autonomy and build self-confidence
Work with schools to create Individualized Education Plans (IEPs)
Foster a positive mindset around differences and abilities
Establish consistent routines to manage medical and therapy schedules

Managing Daily Life

Many aspects of daily life can be adapted for those with BBS:

Nutrition and physical activity: Tailored meal plans and gentle exercise can support healthy weight management
Transportation: Mobility training or ride-share apps can help with independence
Job training and employment: Vocational rehab programs can help teens and adults with BBS prepare for meaningful careers

Mental and Emotional Wellness

Coping with a rare condition like BBS can feel overwhelming, especially when facing isolation or misunderstanding. Support mental and emotional well-being by:

Connecting with support groups—online or local
Accessing therapy or counseling for stress, anxiety, or depression
Engaging in hobbies, community events, or advocacy work

Joining the BBS Community

You are not alone. Organizations like A Race Against Blindness and other rare disease communities are here to provide information, connection, and hope. Sharing your story and learning from others can be incredibly empowering.

Helpful Resources

Help Us Create a Brighter Future

Through your support, A Race Against Blindness is working to raise awareness, fund research, and provide resources for families affected by Bardet-Biedl Syndrome. Together, we can build a world where rare doesn’t mean forgotten.

Living with Bardet-Biedl Syndrome