David Hamlin, parent of a young adult with Pompe disease (and founder of United Pompe Foundation) describes the 12 hour day that is necessary for his son receiving enzyme replacement therapy (ERT) every 2 weeks to manage his condition.
The treatment for Pompe is Lumizyme (alglucosidase alfa) and it is administered to patients by intravenous (IV) infusion. Like other protein-based medications, Lumizyme cannot be taken as an oral treatment because proteins are destroyed in the digestive system. Infusion into the bloodstream bypasses the body's digestive processes.
The recommended dosage of Lumizyme is 20 milligrams for each kilogram (about 2.22 pounds) of body weight.
It takes approximately 4 hours to administer a full dose of Lumizyme, once every 2 weeks.
Lumizyme infusions are administered by a healthcare professional.