Nystagmus Networking
By John Sanders
Describing nystagmus is never easy, as the effects it has on someone's vision and life can vary enormously. At a basic level, our eyes move uncontrollably, we can't see very far and our vision goes up and down throughout the day. However, dizziness, light sensitivity and balance are among other problems associated with nystagmus. It also takes us more time to see and our vision gets worse when we are tired or stressed.
Consequently, there is no such thing as a typical sufferer. For example, one person with nystagmus might be registered as Partially Sighted, in full-time employment and not wear glasses. Another may not be able to register as Partially Sighted, yet not see well enough to drive, be unemployed and wear glasses.
Information is key
Nystagmus is hard to understand and the situation is not made any easier by the fact that many of us know little about how it affects us. Even worse, some people have never been told they have nystagmus. In fact, the lack of information given to sufferers and their families is often a major problem in itself, as this comment from our website guest book shows:
"We have just found out that our 9 month old son has nystagmus - something we had never heard of until this week. We feel shattered and scared and it has been quite a comfort to find out much more information on this website."
Nystagmus also leads to social problems. Having "wobbly eyes", possibly a null point (which could mean turning your head to see straight ahead) and missing out on everyday visual cues gets us into all sorts of difficulties. The results can be low self-esteem and lack of confidence, as this 27-year-old explains:
"I've always hated my eyes, since I was a child I've always thought of myself as a freak and have been treated by others as strange. My school life was awful, placed at the back of the class as the teachers thought I was a problem child, rather than someone who needed help."
Positive action
So what can be done to help people with nystagmus and reduce its effects? Broadly speaking, the Nystagmus Network favours a twin track approach combining research into possible treatments with better support and information.
On the medical side, glasses should be worn to correct any other eye problems. Tinted lenses -- wraparound where appropriate -- can help with light sensitivity. Surgery can help some people, especially with the null point, and may improve distance vision too. Drugs may help control nystagmus when it develops in adult life (it's then usually referred to as Acquired Nystagmus, as opposed to Congenital Nystagmus or Early Onset Nystagmus).
In the UK, hospitals and universities in Cardiff, Leicester, London, Manchester, Plymouth and Sheffield are among those carrying out research into nystagmus. Projects include improving surgery, gaining a better understanding of nystagmus and the possibility of intervention to prevent nystagmus developing in infants.
A number of therapies have been tried in connection with nystagmus. There is little evidence that any of them will lead to major improvements in vision for most nystagmus sufferers. However, some therapies, such as cranial osteopathy and acupuncture, may help some people make better use of their existing vision.
Working together
On the information and support side, the Nystagmus Network operates a telephone helpline and produces a quarterly newsletter (available in large print, on tape, by email and on disc). Our publications include a general guide "Early Onset Nystagmus" plus two for children: "Wobbly Eyes" and the newly published "Tales of Northwick". Fact sheets cover issues such as driving and computers. We also organise meetings and provide speakers for professional training.
Being a small organisation with just one employee, we rely heavily on working with others. We often refer our members to other voluntary agencies, including NALSVI members, for advice on LVAs, mobility training, local services, etc. We know from experience that information, support and access to the right services can improve the lives of people with nystagmus no end, as the 27 year old quoted above says:
"Since being a member of Nystagmus Network, I've been given the confidence to go to university to study Multimedia Systems and try and make a better living for myself."
This article first appeared in 2002 in the NALSVI newsletter.
© John Sanders, 2002
Email: John Sanders
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