Living with Galactosemia


Galactosemia in Adults

Because galactosemia impacts everyone differently, some young adults will complete college and/or obtain stable employment. Others may have a hard time living independently because of worsening or new long-term complications. Complications at this stage may include:

  • Cataracts
  • Attention deficit hyperactivity disorder (ADHD)
  • Tremor – involuntary muscle contractions
  • Seizures – while uncommon, epilepsy has been reported in a minority of galactosemia patients

Visiting your specialist

As you enter the young adult hears and adulthood you may no longer visit your specialist regularly. Depending on existing complications you may still need to receive regular testing for the following:

  • Neuropsychological assessments
  • Additional Neurological testing
  • Bone density screening
  • Hormone testing (for females)
  • Eye exams for cataracts

Galactosemia Toolkit for Newly Diagnosed Families

The Galactosemia Foundation’s informative guide gives you the tools and resources you need to be the best advocate for your child.