Tips for Caregivers

The challenges of Pompe disease affect not just patients, but their 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.

If someone is taking care of a loved one with Pompe disease, they should remember to take care of themselves too. Caregiving can be draining—both physically and mentally—and one can better help others if at their best. Reaching out to other family members and friends can also help.

Accepting Outside Help

If a child or loved one needs round-the-clock care, caregivers need to be realistic about how much they can handle. Some patients may need specialized medical care that family members cannot provide. Accepting the help of nurses, home health aids, and other professional caregivers may be difficult, but it can be a sound option in many cases.

Reaching out for emotional support is also important. Patient organizations can connect families for sharing experiences and practical advice.

Additional tools and resources

Strategies for Supporting Children

Caring for a child with Pompe disease requires both accommodating their medical and physical needs as well as providing emotional, mental, and social support. Following are some strategies and tips that may help:

  • Talk to the child’s doctors and care providers about the best ways to explain Pompe disease and its effects to children
  • Make young patients understand that Pompe disease is nobody’s fault
  • Discuss whether patients want to talk to friends and classmates about their condition
  • Helping children remain as active and independent as possible by giving them tasks, chores, and activities tailored to their age and abilities
  • Encouraging involvement in sports, art, and music programs that meet a child’s needs for social interaction and physical activity
  • Adapt a child’s interests and hobbies to their changing condition, and explore new activities to replace past ones
  • Become an advocate for a child’s special needs

Genzyme Support Services

Learn how Genzyme can help people affected by Pompe disease with medical information, advocacy, treatment support, and more.

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Organizations & Websites

Get lists of online resources and worldwide organizations and associations that offer information, support, and more for people living with Pompe disease.

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