Which resources do patients and their families have?


Medical caregivers

Due to the nature of the disease, patients with Pompe disease often require interdisciplinary care. This means that you and your family may want to enter into a partnership with a team of skilled doctors who can help you each in their own way. A general practitioner or, for young children, a pediatrician, for example, can treat the common ailments, while a doctor with experience in the treatment of Pompe's disease can assist the patients expertly through regular checks.




Your doctor will determine whether you should consult other specialists. For example, a cardiologist to see if the heart is enlarged, a lung specialist to treat and monitor breathing problems, a neurologist who can examine the muscle relaxation, a physiotherapist who helps you to stay mobile or makes you more mobile, and finally a geneticist or genetic advisor. In severe cases, families can choose to call on a recognized nurse or nurse for home care to relieve the people who take care of the patient

Information and support

Although Pompe disease is rare, patients and their families - in addition to their team of medical professionals - can call upon patient organizations that are committed to this disease. Below are some [COUNTRY X]