Tay-Sachs disease


How do I find a center of excellence in Tay-Sachs disease?

The best way to obtain the most accurate, current, clear, and comprehensive information is to be seen at a lysosomal storage disease center (LSDC). LSDCs are genetic centers that specialize in the treatment of patients with lysosomal conditions such as Tay-Sachs disease. At most centers you will see a medical geneticist, genetic counselor, and nurse who work as a team to answer your questions, discuss testing, identify your at-risk family members, and develop a comprehensive evaluation and treatment plan for you. The LSDC will work with your current doctors to organize the treatment, tests, and specialists you need. There is at least one lysosomal storage disease center in every region. A partial list of treatment centers can be found online at the Emory LSDC's website. Please feel free to call the Emory Lysosomal Storage Disease Center at 800-200-1524 to locate a center in your state.

  • Emory LSDC website. http://genetics.emory.edu/patient-care/lysosomal-storage-disease-center/websites.html
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What doctors do I need to see to manage and treat Tay-Sachs disease?

What doctors do I need to see to manage and treat Tay-Sachs disease?

Rare diseases that affect multiple organ systems like Tay-Sachs disease 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, a multidisciplinary team may require a specialist for neurological disorders who will monitor the function and health of the central nervous system and brain in children (pediatric neurologist); a neurologist for adults with Tay-Sachs disease; a lung doctor (pulmonologist) who can monitor lung function and health and treat breathing problems; an eye specialist (ophthalmologist) who can monitor the function and health of the eyes; a specialist in digestive disorders (gastroenterologist); a psychiatrist; 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 Tay-Sachs disease.

  • Kaback MM, Desnick RJ. Hexosaminidase A Deficiency. GeneReviews website. Accessed September 20, 2016. http://www.ncbi.nlm.nih.gov/books/NBK1218/

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