Branchiootic syndrome

Rare diseases that affect multiple organ systems like branchiootic syndrome can benefit from a multidisciplinary approach. This approach involves healthcare professionals with specialized skills and expertise. They work together to make treatment recommendations and to provide quality care of individuals and families. Depending upon the specific symptoms in an individual multidisciplinary team may require a specialist (otolaryngologist) who can monitor lung function and health and treat problems with the ears; a doctor (audiologist) who can monitor and treat hearing loss; surgeons; a genetic counselor who can help people understand the disease and the implications for the person and other family members; and a metabolic disease specialist.

Talk to your doctor about the best specialists in your area to follow an individual with branchiootic syndrome.

If you have branchiootic syndrome, your primary care provider should know that you should have continued hearing evaluations because sometimes hearing worsens over time. A thorough examination of the ears is required to determine if malformations are present. They should also do comprehensive physical examinations at each visit to look for branchial fistulae and clefts/cysts. These abnormalities can become infected (requiring antibiotics), and may need to be surgically removed or corrected.