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Living with Galactosemia
Adults
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
Resources
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.