ABSTRACT

Nomatter what a person’s age, the diagnosis of a neurodegenerative disorder can be devastating. When such a disorder is inherited, effects can ripple through the family and often through many generations. The child or adult, their spouse or partner, their friends and family will have a plethora of questions:What is this condition?How rare is it?Will it get worse? Is there a cure? Is there a decreased life expectancy? Will my children or other relatives be affected? Is there any prenatal testing? Is there a test to diagnose this condition before a person has symptoms?Will I or my family face discrimination in social situations, in seeking insurance coverage, or in employment? Genetic counseling can make a difference in how individuals and their families cope with the diagnosis, make decisions about genetic testing (particularly presymptomatic or predictive testing), and make reproductive choices and other important life decisions. Genetic counseling may be a one-time meeting or occur over several sessions, even over many years (1).