Caring for a child or loved one with a complex chronic condition like Pompe disease requires specialized, time-consuming, and round-the-clock care that can be physically and emotionally exhausting.
Caregivers need to be realistic about how much they can handle.
Some patients may need specialized medical care that family members cannot provide, which may require enlisting help from family, friends, nurses, or other professional caregivers.
Reaching out for emotional support is also important. Patient organizations can connect families to share experiences and practical advice.
Caring for a child with Pompe disease requires both accommodating their medical and physical needs as well as providing educational, emotional, psychological, and financial support. Following are some strategies and tips that may help: