Learning About Pompe
Managing Pompe
Treatment Options
Supportive TherapiesWhat Types of Supportive Care Are Available for Pompe Disease?
Presently there is no approved treatment for Pompe disease. For people with Pompe disease, supportive health care is used to manage symptoms and minimize complications whenever possible. Supportive care is a range of services delivered by a team of health care professionals. Supportive care will continue to be an important part of managing Pompe disease once an approved treatment becomes available.
A team approach to supportive care
Although it may not change the course of the disease, supportive care can ease the burden of living with Pompe disease by helping people with the disease feel better emotionally and physically. It is important to work with your health care team to find the specific therapies that may offer the most value for you or your child.
To learn more about types of supportive therapies that may be helpful to people with Pompe disease, click the links below:
Finding medical specialists who assist in the management of Pompe disease
A management team for Pompe disease may include some or all of the following:
Primary care physicians
Pediatricians
Neurologists
Pulmonologists
Cardiologists
Metabolic specialists
Geneticists
Orthopedists
Play an active role to help get the supportive care you need
You may find that many health care providers have never heard of Pompe disease and may not know how to meet your specific needs. If that’s the case, you may have to take additional steps to get the kind of care you need. Start by reaching out to Pompe patient organizations to see if they know of any therapists in your area who have been trained to treat neuromuscular disorders.
Contact Genzyme to request free copies of the Understanding Pompe Disease and A Physician’s Guide to Pompe Disease booklets. These resources are available to members of your health care team, who may not be familiar with Pompe disease.
Try to learn as much as you can about Pompe disease so that you can ask your health care providers about therapies that might be helpful for you. Taking an active role may be helpful when you are affected by a rare disease like Pompe.
Please note that patients should always talk with their physicians before starting any form of supportive therapy.
