Nystagmus is an involuntary and rapid movement of the eyes from side to side and sometimes up and down.  The arc of the movement can vary from quite large to small and also varies over time and between different people.  It is usually most noticeable during childhood and the ‘teens’.  It  can reduce with age but is rarely totally absent.  It is usually more noticeable when a person is nervous or experiencing stress.

The rapid movements make it difficult for the eyes to focus. This in turn can make it more difficult for a person to read text and carry out tasks requiring a constant focus on one point.

Most people with Hermansky-Pudlak Syndrome and other forms of albinism find that they can reduce the nystagmus a little if they look at things from a particular angle or hold their head in a particular position. For instance whilst reading a person may appear to be looking at a book out of the corner of one eye rather than viewing the book from a ‘straight-ahead’ position or they may appear to be looking over the top of glasses.  This is called a ‘null point’ or ‘null position’, a position of the eyeballs at which the nystagmus is least.

There is not an effective treatment for nystagmus as yet.  Treatments have included biofeedback and surgery to help control the movement but research has not shown any specific treatment to be effective in all cases.

Features of the Visual impairment of Hermansky-Pudlak Syndrome