After a Pompe diagnosis, it can feel like the disease has taken over control of your life and you may start to feel powerless and helpless. However, there are ways that you can empower yourself and regain your sense of agency.
Managing chronic pain is critical for those living with Pompe disease. A comprehensive plan can enhance quality of life and support daily functioning, helping patients navigate the challenges of this rare disorder.
Financial planning for people with Pompe disease may involve taking into account healthcare needs, treatment, medical bills, and other expenses balanced against sources of income.
In some specific cases, people with Pompe may be able to get ERT infusions at home, allowing them to be in the comfort of their own home and avoid having to travel to get their infusions.
A few reasons someone with Pompe disease might consider stopping one treatment and switching to another include side effects, medication effectiveness, issues with treatment adherence, and the availability of newer therapies.
For caregivers of children with Pompe disease, it can be difficult to know where to turn to find support and resources. Keara Engle, mother to 6-year-old Cayden who lives with Pompe, has some advice.
By preparing for appointments and fostering open communication with your healthcare providers, you can maximize the efficiency and effectiveness of medical appointments.
Along with approved treatments such as enzyme replacement therapy, a multidisciplinary healthcare team can provide coordinated care to treat LOPD symptoms, such as pulmonary, neuromuscular, orthopedic, and gastrointestinal issues.Â
When Dwayne Wilson found his career to be too physically demanding with Pompe disease, he had to change trajectories. But now, he says, he finds freedom in a cubicle.
An occupational therapist can help people with Pompe disease navigate your daily life with greater ease and confidence. This support can help them live more independently and improve quality of life.
Get regular updates to your inbox.
