Stress

The diagnosis of a chronic, progressive disorder such as Pompe disease for yourself or a family member can be life-altering. Psychological support can help reduce the added stress and negative emotional impact of such a diagnosis on you and your family. The following will provide some information about the…

Living with a chronic disorder such as late-onset Pompe disease can lead to anxiety, stress, and feelings of isolation. If you have the disease, recreational therapy may help to improve your psychological and physical well-being. What is Pompe disease? Pompe disease is a debilitating and progressive disorder that’s…

The first wave of COVID-19 in Europe severely disrupted access to care and raised stress and anxiety in people with rare diseases, negatively affecting their health and well-being, according to a survey conducted by Eurordis-Rare Diseases Europe. “People living with rare diseases in Europe have found themselves caught as collateral…

As the caregiver of someone with Pompe disease, you know how physically and emotionally draining it can be to help your loved one with everyday tasks, partake in activities they enjoy, or — sometimes — to simply move about. A practice called mindfulness may help you cope. What is…

Living with the symptoms of a rare disease like Pompe disease can be very stressful. Following are a few tips to minimize stress if you have been diagnosed with Pompe disease. Know Pompe disease and its symptoms Having a good understanding of the nature of Pompe disease symptoms…

Pompe disease can affect both children and adults, and cause symptoms that range from slow growth and poor reflexes to heart and liver problems. Caring for patients with Pompe disease can be challenging and cause stress, so here are some tips if you are a caregiver to help…