Branchiootic syndrome

Healthcare/Doctors

How do I find a center of excellence in branchiootic syndrome?

There are no specific centers of excellence for branchiootic syndrome in the United States. The Hereditary Hearing Loss Homepage is a website that "aims to give an up-to-date overview of the genetics of hereditary hearing impairment for researchers and clinicians working in the field." This website is run by two physicians, one at the University of Antwerp in Belgium and one at the University of Iowa. They may be able to provide advice to families about physicians with experience in treating branchiootic syndrome.

References
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What doctors do I need to see to manage and treat branchiootic syndrome?

If I have branchiootic syndrome, what should my primary care provider know about managing the disease?

What doctors do I need to see to manage and treat 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.

References
If I have branchiootic syndrome, what should my primary care provider know about managing the disease?

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.

References
  • Smith RJH. Branchiootorenal Spectrum Disorders. GeneReviews website. https://www.ncbi.nlm.nih.gov/books/NBK1380/
  • Branchio Oto Renal Syndrome. The National Organization for Rare Disorders website. http://rarediseases.org/rare-diseases/branchio-oto-renal-syndrome/

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