Living with Galactosemia


Galactosemia in Teens

The teenage years aren’t particularly easy on anyone, but they can be especially tough for teens with galactosemia. While they are growing and working to find their place in the world, they may feel restricted by their galactosemia diagnosis, due to complications they experience and/or food restrictions.


Some of the complications teens may continue or begin to experience are:

  • Growth Delays: Some teens may not reach the average height of their classmates.
  • Puberty and fertility issues: Both males and females may experience delays in puberty. Females may require intervention to begin puberty. Females may also experience Primary Ovarian Insufficiency (POI).
  • Anxiety and Depression: People with galactosemia experience anxiety and depression more frequently than their peers.
  • Learning difficulties: Although likely discovered at a younger age, learning difficulties can continue through the teen years. It’s important to work with the school to determine what help is available, based on each situation.

Visiting your specialist

Teenagers will continue to see their specialist once a year. Depending on the situation, they may continue to receive regular neuropsychological assessments, psychological and cognitive testing and bone density screening. In addition, females will likely start seeing an OB-GYN specializing in female healthcare to assist with puberty, if necessary and monitor for primary ovarian insufficiency.

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.