What is EFE?
The term Endocardial Fibroelastosis (EFE) refers to the thickening of and the replacement of the heart muscle with fibrous tissue. It may be related to parasitic infections and viruses such as the Coxsackie virus (a form of common cold); or rarely, may have an inherited nature. Unfortunately, it is seen to frequently be fatal in affected children and women; less often so in men. Patients present with palpitations, syncope and shortness of breath.
There is, to date, no clear information on how many children and young people die of this condition; or how many cot deaths are actually caused by Endocardial Fibroelastosis and not identified as such. It is a fact that some parents do not find out the cause of death in their children, due to the lack of expertise and lack of investigation carried out at post-mortem.
Medical treatment has a limited role in terms of steroids and immunosuppressants. Surgery may be needed in some cases – heart transplant has been offered to some.