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Navigating
Galactosemia
as an adult

(ages 18+)

Galactosemia Symptoms

Take control of your condition

Some symptoms that begin earlier in life may continue into adulthood. Because of long-term health issues, it may be difficult for adults with Classic Galactosemia to become independent.

Galactosemia symptoms that adults may experience

Monitoring needs

Requirements for adults

The monitoring and assessments you paid close attention to as a child and young adult will likely remain similar in adulthood, though you might find that you go in for assessments less frequently.

  • 18 years and older


  • Neuropsychological assessment for executive function

    As you get older, your neurologist may occasionally want to test how your brain processes information, solves problems, makes decisions, and regulates your thoughts and feelings to monitor for any signs of change.

  • Additional psychological and neurological testing

    Your neurologist and other similar specialists may want to assess and monitor for signs of anxiety, depression, ADHD, tremor, and seizures.

  • Bone density screening

    Every 5 years, your doctor will likely want to continue to monitor the amount of important minerals in your bones.

  • Hormone testing (for females)

    If you are a female with Galactosemia, your doctor may do blood tests that check your levels of estrogen hormones.

  • Eye testing

    Cataract screening is done when/if patients are non-compliant with their diets.

Know Your Healthcare Team

Identifying the right team for you

Primary care provider

Your primary care provider can help you manage life with Galactosemia as an adult, helping to connect you with other care professionals as you need them.

Dietitian

Your dietitian can offer lifelong advice on your diet. As an adult, your dietitian can help coach you on how best to manage your diet and offer advice on how to keep up your Galactosemia-friendly lifestyle.

Ophthalmologist

Since cataract development is common in adults with Galactosemia, seeing an ophthalmologist can help you monitor for any changes in your vision.

Speech therapist

Speech therapy may be needed even in adulthood to help treat or manage speech, language, social communication, cognitive communication, and swallowing disorders.

Neurologist

A neurologist may be needed to help you diagnose, treat, and manage cognitive or motor delays due to potential complications from Galactosemia, including tremor and seizure, though these are uncommon.

Psychologist

Depression and anxiety are common in adults with Galactosemia. Psychologists, licensed therapists, or counselors can help you develop the tools to cope through difficult emotional periods in your life.

dietary needs

From diet to lifestyle as an adult

As an adult with Galactosemia, there are ways you can keep track of foods that are Galactosemia-friendly and still enjoyable.

Click below for more information about a Galactosemia-friendly diet and reading food labels.

Learn More

Vitamin deficiency

Keeping bones healthy now and in the future.

Approximately 3 out of 4 adults with Galactosemia have low vitamin D since they get less calcium in their diet. Consider discussing taking vitamin D and/or calcium supplements with your healthcare provider.

Testimonials

Living with Galactosemia

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References