Securing the future: Financial planning with Pompe disease
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.
Pompe pathways: Empowering choices
for LOPD patients and caregivers
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.
Watch: Pompe playbook for daily flourishing
Read: Empowerment through knowledge
ERT home infusions: Everything you need to know
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.
Therapeutic crossroads: Evaluating if it’s time for a treatment switch
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.
Pompe protectors: Essential tips for caregivers
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.
Driving the conversation: Maximizing your doctor’s appointments with Pompe
By preparing for appointments and fostering open communication with your healthcare providers, you can maximize the efficiency and effectiveness of medical appointments.
How to build an LOPD care team that’s right for you
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
How my desk job gives me freedom with Pompe disease
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.