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13-1445B Adults Living With Galactosemia: Challenges Navigating The “Real World”

Susan M Huber BSN, MS, CDP

Studies confirm the multiple occurrences of various physical, mental, and psycho-social issues associated with Galactosemia in adulthood (Berry et. al 2012). Facebook conversations across the world reflect multiple problems and challenges for adults living with the disorder. Adults are raising questions about finding supportive services, applying for disability benefits, living independently or semi-independently, dealing with anxiety and depression; hoping for practical answers.

We have decided to focus on this topic in the format of a Roundtable discussion. We want to hear first-hand about the challenges adults are facing navigating in the “real world” with the intent on finding answers and/or resources to help.