Living with Bardet-Biedl syndrome
Fact-checked by Bardet-Biedl syndrome (BBS) can affect many areas of your daily life, including hunger, weight, vision, learning, and emotional well-being. Living with BBS or caring for someone with the condition often involves adjusting routines and support strategies as needs evolve.
Coping with BBSÂ can feel overwhelming at times, but supportive daily routines may help make symptoms easier to manage and reduce stress for you and your caregivers or family members.
Building daily routines that work for BBS
Daily life with BBSÂ looks different for everyone, and needs may shift over time. Staying flexible and adjusting routines as needed can help support daily functioning and quality of life.
Helpful daily routine strategies may include:
- creating structured meal routines to support healthy eating habits
- using calendars, reminder apps, or written checklists to support independence
- keeping consistent schedules for sleep
- planning ahead for medical care and school/work accommodations
- building time into the day for rest and emotional support
Because symptoms can change over time, your routines might also need to change. Staying in communication with your healthcare team may help you identify areas where additional support or accommodations could improve your well-being.
Managing hyperphagia, food-related routines at home
Hyperphagia, or extreme and insatiable hunger, is one of the most common symptoms of BBS. If you or your loved one is living with BBS, managing constant hunger and food-related behaviors may feel especially challenging.
Because BBS can make weight management more difficult, maintaining a balanced diet and healthy weight may help lower the risk of complications such as high blood pressure and type 2 diabetes.
Helpful strategies may include:
- keeping regular meal and snack times
- maintaining a consistent eating environment
- breaking meals into smaller portions
- reducing exposure to cooking smells or food-centered activities
Because BBS can cause kidney issues, some common diet plans, such as high-protein diets, might not be appropriate. Talk with your doctor before making significant dietary changes or starting a new meal plan. A doctor or dietitian can help create a plan tailored to your specific needs.
If food-seeking behaviors are difficult to manage, you may find it helpful to use food security measures at home, such as limiting excess food in the house or placing locks on the refrigerator or pantry.
For travel or special events, it may help to:Â
- bring your own meals or snacks
- plan meals ahead of time
- choose social activities that do not center around food
Because BBS affects how the body regulates hunger, satiety, and energy use, it can be difficult to manage through standard weight-loss strategies such as diet and exercise. However, some medications can help manage hunger and weight in BBS. Talk with your doctor about whether these treatments are appropriate for you or your loved one.
Adapting to vision changes
BBS often causes vision difficulties that begin during childhood and worsen over time. Working closely with an ophthalmologist, or eye doctor, may help you monitor vision changes and access supportive tools.
Helpful tools and supports can include:
- sitting near the front of the room
- using large-print books or aids like portable magnifiers
- setting accommodations such as extra time for exams or oral responses
- screen-reading software and speech-to-text technology
- taking extra breaks to manage eye strain
BBS might make it harder for you to see at night, distinguish colors, or notice objects in your peripheral vision. These vision changes can make driving unsafe. If you live in an area with public transit or paratransit services, these resources may help you maintain independence even if your vision worsens. Family members, friends, or caregivers can also help with transportation when needed.
Balancing school, work, appointments, independence
Your level of independence with BBS may change over time, but early and consistent support can help maximize independence. Physical, occupational, and speech therapy are often recommended as soon as possible after diagnosis.
If your child has BBS, they might need educational support due to developmental delays or learning disabilities, as well as additional help to develop social skills and emotional regulation techniques.
Some children may benefit from individualized education programs, classroom accommodations, or extra academic support at school. Transition-focused educational and vocational support programs may help teens and young adults with BBS prepare for more independent daily living, work, and adulthood responsibilities over time.
Protecting mental health and asking for help
Managing daily life with Bardet-Biedl syndrome can be emotionally challenging. Consistent mental health support can help ease the emotional symptoms of BBS. If you are caring for someone with BBS, you may benefit from support as well.
Support options may include:
- joining a support group
- talking with a mental health professional
- asking your care team about respite care
- connecting with other families living with BBS
- building regular breaks into caregiving routines
Organizations such as the Bardet Biedl Syndrome Foundation offer additional resources and supportive communities for people navigating Bardet-Biedl syndrome routines.
Questions to ask your care team over time
BBS is a chronic long-term condition, and your needs might change over time. Asking questions during appointments can help you better understand what to expect and what support may be available.
Questions you may want to ask include:
- How may BBS symptoms change over time?
- What strategies may help manage hyperphagia and food-seeking behaviors?
- How often should vision, kidney, or heart health be monitored?
- Would meeting with a dietitian, therapist, or occupational therapist be helpful?
- Are there school or workplace accommodations that may help with daily functioning?
- What mental health resources or support groups are available?
- Are there new treatments or clinical trials we should discuss?
Building supportive routines, staying connected with your care team, and asking for help when needed may help you or your loved one feel more prepared to navigate daily life with BBS.
Rare Obesity News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website.
