Pompe disease

Living with

How will Pompe disease affect my daily life?

Since Pompe disease affects multiple systems of the body, changes in routine and lifestyle may be required. For example, more time will be needed for medical visits and support may be needed for physical tasks. However, this doesn't mean that someone living with Pompe disease cannot continue to do activities that he/she enjoys. Many activities can be modified to be less intensive. Individuals who work may need to discuss strategies with their employer to make their workplace easier to move around or to make hours more flexible. Schools may need to be involved to make similar changes for a student living with Pompe disease.

The more severe the muscle weakness is for someone with Pompe disease, the more the disease affects daily life. It can get harder to do physical activities such as walk, stand, or climb stairs when the muscles get weaker. An individual may need to get help or change their day-to-day routine to keep as much independence as possible. Although deciding to use a wheelchair can be difficult, it may help people to stay as active as they want to be.

Pompe Disease - Patients & Families: Living with Pompe Disease https://www.pompe.com/en/patients/living-with-pompe/day-to-day-life.aspx

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