ABSTRACT

In 1908, Schwalbe described an Eastern European family of Ashkenazi Jewish descent in which three siblings were affected with childhood-onset dystonia.1 The term dystonia was not yet coined and Schwalbe called them chronic cramps; he also described the movements as hysterical. Three years later, Oppenheim reported the same disorder,2 invented the term dystonia, argued for an organic basis, and named the condition dystonia musculorum deformans. Because of his contribution characterizing this form of dystonia, DYT1 dystonia has also been named ‘Oppenheim’s dystonia’. But Oppenheim didn’t recognize that the disorder was inherited; that was considered in yet another report.3 Thus, within its very first descriptions, lay important clues to the etiology of DYT1 dystonia. But for over half a century progress was stymied. In part this was due to nosologic confusion and the lumping of what we now categorize as primary and secondary dystonias. Racist political doctrine also contributed. In 1944 Herz resurrected primary dystonia as a distinct condition,4 but he chose to ignore its predilection to affect Jews. He wrote:

I have not elaborated on the possible prevalence of dystonia in any one group . . . recent experiences with Rassebiologie have been so depressing and grotesque that they do not encourage speculations.