The challenges of Pompe disease affect not just patients but their friends and family members as well.
As the disease progresses and patients face greater physical challenges, they must turn more and more to parents, spouses, and others for support with daily activities.
Some patients may need specialized medical care that family members cannot provide. Accepting the help of nurses, home health aides, and other professional caregivers may be difficult, but it can be a sound option in many cases. If someone is taking care of a loved one with Pompe disease, they should remember to take care of themselves too.
Reaching out to family members and friends can also help. The patient organizations section of the Resourcespage can connect families so that they can share experiences and practical advice.
Emotional health should not be forgotten when confronting Pompe disease. Considering how to care for yourself emotionally and adapt to new challenges is important throughout the stages of the disease.
You should consider how Pompe disease will affect work and social life. You may want to think about how to incorporate the potential outcomes of Pompe disease into your current work situation and social involvement.
How to build and maintain support networks of friends, family, and other patients and families of people with Pompe disease should be considered.
Coping with Pompe disease also consists of thinking about how Pompe disease may affect you and your family’s finances.