Taking Care

Every Pompe disease patient is affected by the disease differently. With its potential to cause severe physical disabilities and even be life-threatening, Pompe disease can take a serious emotional toll. Signs such as muscle weakness, fatigue, movement and breathing difficulties can interfere with basic day-to-day tasks, triggering feelings of frustration.

A variety of services and resources can help provide the emotional, psychological, and social support that is an important aspect of comprehensive patient care.

One of the best ways patients may play an active role in dealing with Pompe disease is by learning as much as they can about the disease and its management.  Although this may be overwhelming at first, it may prove helpful when dealing with a rare disease.  For example, Pompe patients and their families can reach out to patient organizations for information.

Getting Professional Help

Professional counselors and other health care providers listed below can help patients and their families better manage the challenges of Pompe disease and deal with lifestyle changes that may be required.

  • Psychotherapists provide psychological counseling and the opportunity for individuals and families to talk about their worries, fears, and feelings
  • Social workers offer practical assistance on treatment logistics, financial concerns, and other matters
  • Nurses and home health aids help ease the disease’s burden on families and loved ones by providing the patient with medical and personal care

More tips for maintaining personal well-being

Genzyme Support Services

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

Learn More

Organizations & Websites

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

Learn More