Coping with Infantile-Onset Pompe Disease

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.

Find tools and resources here.

Strategies for Supporting Children

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:

  • Gather as much information as you can about your child’s condition and ways that you can provide care ranging from resources that connect you with other caregivers to services that can teach you how to operate assistive devices
  • Ask your physician about the best way to discuss the illness with your child
  • Become an advocate for your child’s special needs
  • Help children remain as active and independent as possible by allowing them to participate in activities (sports, art, music, etc) of their interest; this will also provide an opportunity for social interaction
  • Caring for a child can be physically and emotionally exhausting; remember to take care of yourself as well