Health Insights

How Will Pompe Disease Affect My Work Life?

If you have late-onset Pompe disease (LOPD) and are employed, or are considering employment, you’re likely going to need some workplace adjustments, particularly as the disorder progresses. Here’s some information about how Pompe disease might affect your work life. What is Pompe disease? Pompe disease is a debilitating…

Your Daily Routine With Late Onset Pompe Disease

While the effects of late-onset Pompe disease on everyday life are far-reaching, there are steps you can take in your daily routine to help ease these difficulties and work around your limitations. It just takes some advance planning, a little bit of creativity, and perhaps some adaptive equipment.

Shoshin for Adults Living With Pompe Disease

If you have a chronic disease such as late-onset Pompe disease, a Japanese concept called shoshin may help you to perceive the world, and your disorder, in a different light. Based on Zen Buddhism, shoshin means “beginner’s mind.” What is Pompe disease? Pompe disease is a debilitating and…

Pompe Disease Advocacy

Health advocacy can help improve the quality and accessibility of care for patients with rare disorders like Pompe disease. Following is information about patient advocacy in general, and Pompe disease specifically, and why it is important for patients, caregivers and family members. What is Pompe disease? Pompe disease is a…

Respite Care for Pompe Disease

Patients with Pompe disease may need constant care. Providing such care can be mentally, physically, and emotionally depleting for a caregiver. Sooner or later, you will need to refuel your body and mind. Respite care can give you the chance to rest, relax, and restore. About Pompe disease Pompe disease…

Pompe Disease and Hearing

Hearing loss is a very common for infants with Pompe disease. It may also affect some people who develop Pompe disease later in life. Here is information about how hearing works, how Pompe disease can cause problems with hearing, and how doctors diagnose and treat hearing loss in these patients.

Treatment Team for Late-onset Pompe Disease

Late-onset Pompe disease (LOPD) can affect a number of different organs and systems in the body. If you have the disorder, you will need to see a multidisciplinary treatment team to ensure you receive the best possible care. Read on for more information about some of the complications that…