I found this on the net too:
© Royal National Institute for the Blind
In Depth
Talking about your generation: Self help for people with nystagmus
Following the success of its first regional meeting in Blackpool a year ago, the Nystagmus Action Group is holding a second meeting in Sheffield this month. John Sanders, honorary chairman of the Group and full time financial journalist, explains that NAG is not just for children and shows how a small self-help group like NAG can tap into the resources of RNIB.
Enquire within
"I've had three enquiries from the Nystagmus Action Group newsletter this week", Helen Oldfield of the RNIB's Education Information Service tells me. "Ah well, I've passed on two enquiries to the Nystagmus Action Group, so we're about even", counters department manager Nancy Chambers.
I'm visiting the department's crowded, ground floor office in Great Portland Street, central London. The RNIB has kindly offered to include details of NAG booklets in a mail-out to 340 peripatetic teachers. This is one way in which a small group like ours can access the resources of RNIB and work together.
For those of you who haven't heard of nystagmus before, it's a complex condition which manifests itself in the form of an involuntary movement of the eyes, normally from side to side, which seriously reduces vision and causes a host of other, less well understood problems.
At least one in a thousand people has nystagmus, and one survey in Oxfordshire (1) found that one in 670 children has the condition, whichshould always be referred to an ophthalmologist. Nystagmus is normally diagnosed by the age of one, and often occurs with other eye conditions, such as glaucoma, childhood cataracts and coloboma. It can also occur with cerebral palsy, Down's Syndrome and many motor system diseases. Although one estimate suggests one in three cerebral palsy sufferers has nystagmus, its effects sometimes go unnoticed in such cases.
Nystagmus has a number of causes and is usually a symptom of an underlying problem in the eye or the neural pathways behind the eye. It is almost always present with albinism. Sometimes it is inherited, but in many cases there is no family history of the condition. There is no known cure and glasses and contact lenses will not correct nystagmus, although they should be worn if prescribed for another eye problem.
People also develop nystagmus in later life, sometimes on its own, sometimes as a symptom of multiple sclerosis and other diseases. Its effects in later life are less predictable and poorly documented. Being diagnosis specific, we don't aim to duplicate or compete with the work of RNIB or other charities and self help groups. However, we do see plenty of opportunities for cooperation. One of our tasks is to persuade our members that they should use RNIB, and that just because it's got the word `blind' in its title doesn't mean the RNIB caters only for those registered as blind.
It's rare now that one of our quarterly Focus newsletters goes out without at least one reference to RNIB. The June issue mentioned the Family Weekends in September, and prompted several enquiries to the RNIB.