Living with Pompe brings physical and emotional challenges.
Patients should know that they are not alone. Although Pompe disease is rare, there are active patient groups and caring health professionals throughout the world who can help patients manage the challenges of living with this disease.
While each experience will always be unique, reaching out to others can bring patients and caregivers both support and new perspectives on their situation.
Links to websites with more information on how to live with Pompe disease.
Taking care of your family members who have Pompe disease isn't always easy. Here are some resources with more information for patients and care givers.