What risk of ALS do my children have?

The question of the risk of passing ALS on to one’s own children depends largely on whether a sporadic or familial (hereditary) form of ALS is present. 95% of all patients with ALS have a “sporadic” disease – other family members with ALS are not known.

A further 5% of all those affected have genetic changes (according to current scientific knowledge) – even without a family history of ALS. In patients without genetic changes (around 90%), the risk of offspring of ALS patients also developing ALS is low. The risk may be slightly higher than in the “normal population”. Only in the familial (hereditary) form of ALS and in patients with evidence of a genetic change (mutation in an ALS gene) can the risk of transmitting ALS to offspring be determined more precisely. The risk of transmission is largely determined by the family tree (“inheritance”) and the specific altered gene (type of gene and mutation).

Determining the risk requires a human genetic analysis of the family constellation, molecular genetic diagnostics and an interpretation of all available information by a specialist in human genetics. A blanket statement regarding the risk for subsequent generations is not justified.