The first description of Danon Disease was in 1981 when 2 boys with heart and skeletal muscle disease
(muscle weakness) and mental retardation were described. The disease is named after Dr. Danon who first wrote about the disease.
Danon Disease looked initially like another rare genetic condition called 'Pompe' disease. Under the microscope,
the muscles from the Danon Disease patients looked similar to muscles from Pompe disease patients. However the tests for
Pompe disease are normal in Danon Disease patients. This shows that Danon Disease is caused by something different than Pompe
Danon disease patients are best served with
a team approach that includes a primary care physician in addition to several specialties including cardiology, genetics,
neurology, ophthalmology, rehabilitation medicine, and physical therapy.