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.