Though the causes of HSS are not known, the condition has been well-described in the medical literature for more than fifty years. While it is a rare disorder, most neurologists and geneticists are familiar with the condition and know what features to look for in order to make the diagnosis. Sometimes, however, HSS can be a tough diagnosis to figure out and it may come only after years of hunting for an answer. Since HSS is a genetic condition, there may be several people affected in a family.
Treatment is aimed at alleviating the symptoms but often provides only partial relief.
Physicians and scientists are working diligently to better understand HSS and its causes in order to develop better therapies aimed at treating the underlying problem. Not all HSS is the same disease. The most common form of HSS, which I call classical HSS, has very distinctive features. Classical HSS nearly always has its first signs in childhood. These presenting signs or symptoms may include difficulty with walking or balance or problems with speech.