Day-to-Day Life

The symptoms and challenges of Pompe disease will inevitably require changes in daily routine and lifestyle. But these changes don’t always mean patients have to give up their independence or the activities they enjoy. Instead, they may just need to learn new strategies and approaches to adapt to their situation. These can be as simple as adjusting expectations about what they can do in a single day. Or, they may be hands-on changes such as modifying one's home or workstation to better fit their needs.

This section offers practical tips on living with Pompe disease. Although not everything suggested here may apply to each patient's situation now, some may become helpful as time goes by. Remember that Pompe disease is progressive, so patient's needs will likely evolve over time. A positive attitude, creative problem-solving skills, and the support of others will help with meeting new challenges head on.

Daily Routines

Living with Pompe disease can place a burden on regular daily activities, such as attending school, going to work, and participating in hobbies. Patients may need to take extra time for doctor appointments and treatments.

Keeping up with regular routines can also help patients feel better, both physically and mentally. Patients and caregivers may just need to brainstorm new ways to do so—here are some ideas to get started:

  • Employers may make accommodations at work to help patients keep doing their job. These may include switching patients to part-time or flexible hours, or making changes to their physical work environment.
  • Schools may have special programs to help children with chronic disease.
    Get more tips for caregivers of young children with Pompe disease 

Genzyme Support Services

Learn how Genzyme can help people affected by Pompe disease with medical information, advocacy, treatment support, and more.

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Organizations & Websites

Get lists of online resources and worldwide organizations and associations that offer information, support, and more for people living with Pompe disease.

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