What to expect after a BBS or acquired HO diagnosis
Fact-checked by Receiving a rare obesity diagnosis, such as Bardet-Biedl syndrome (BBS) or acquired hypothalamic obesity (aHO), can be stressful. You may feel relieved to have some answers while also feeling uncertainty about what the diagnosis means for you or your loved one.
This article will help demystify what to expect and give you actionable steps you can take in the days and weeks after a diagnosis.
First steps after a rare obesity diagnosis
Some people may need time to reflect after receiving a diagnosis, while others may want to jump straight into research mode. Regardless of your processing style, focusing on just one action at a time can help prevent becoming overwhelmed. Additionally, because BBS and aHO require ongoing care and management, it’s important to make sure you understand the diagnosis.
Begin by requesting copies of any medical records leading up to being newly diagnosed with BBSÂ or aHO. These may include:
- labs
- vision and cognitive assessments
- brain scans
- genetic testing
- diagnostic letters
Read through and make sure you know what’s in your file so you can best advocate for yourself or your child. Keep these records in a central location so that you have them to refer back to later. Keeping a complete medical record makes it easier when meeting new specialists and can help prevent duplicate testing.
Another step you can take now is to start a list of questions to ask your doctor or your child’s pediatrician. You can keep this in your phone or with your medical records. As you think of nonurgent questions, add them to your list, and ask them at your next appointment.
Coordinating a multidisciplinary care team
While increased appetite and obesity are key features of BBS and aHO, these conditions also affect other areas of the body. For instance, BBS can affect the eyes, kidneys, reproductive tract, and more. People living with aHO, in turn, may deal with sleep and behavioral problems, as well as neurological issues.
While your primary care doctor or your child’s pediatrician may be able to coordinate some aspects of your care, you’ll likely also need referrals to specialists. Your rare obesity care team may include:
- endocrinologists to help manage hormone imbalances
- neurologists to track brain health and manage symptoms like fatigue and headaches
- ophthalmologists to monitor eye health and vision loss
- registered dieticians to help manage weight and provide meal plans
- genetic counselors
Monitoring vision, hormone levels, and organ health
People living with a rare obesity diagnosis often need more routine health checks than people without these conditions. Depending on the condition and how it’s being managed, these could include:
- eye appointments to check for vision loss
- lab visits to monitor hormones and check kidney function
- cognitive tests
- dental exams
- brain scans
During your first appointment with each specialist, ask them to break down how often you or your child will need to see them, and what to expect at each visit. Maintaining a dedicated calendar for medical appointments can help you keep track of visits.
Finding rare obesity support networks
Living with a rare disease can be lonely. It’s important to stay connected with other people who have firsthand experience with the condition and can relate to what you’re going through.
While you may not know anyone in your daily life that lives with one of these conditions, you can find others online through advocacy groups like the Bardet Biedl Syndrome Foundation and Raymond A. Wood Foundation.
You may also be able to find support groups through social media, or through recommendations from your medical team.
Essential next steps
Receiving a BBS or aHO diagnosis can be overwhelming. You may not know what to do first, or you may feel like you need to take action on everything all at once. But BBS and aHO are conditions that require lifelong management, so you don’t need to make big changes all at once. Instead, break things down into smaller, more achievable steps.
Here are some things you can do this week:
- Get copies of medical records and put them in a central location
- Make a list of questions for your doctor or your child’s pediatrician
- Get referrals for any specialists you need to make appointments with
- Join one community group
Taking these actionable steps now can help as you navigate BBS or aHO management.
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.
