Friday, 27 March 2015
The Nystagmus Network is holding its 2015 Open Day in Newcastle’s International Centre for Life on Saturday, May 9th. This is the first time we’ve been to Newcastle and we’re very excited about bringing together 150 people to learn about and share experiences of nystagmus in this great city.
We change the location of our Open Day every year to give people in different parts of the UK a chance to meet others with nystagmus and see what we do. In 2014, the NN annual open day was in Leicester (see photograph)and the year before that in Bristol. However, you don’t have to live in the north-east to attend. Everyone is welcome – we even have people joining us from outside the UK most years.
You can book places online at http://www.eventbrite.co.uk/e/nystagmus-network-newcastle-open-day-2015-tickets-15275380073. To see a short video of our 2014 Open Day go to https://www.youtube.com/watch?v=oRtcgICylak&feature=youtu.be&a
Nystagmus is an involuntary movement of the eyes which often seriously reduces vision. Few people with nystagmus can drive and most encounter some difficulties in every day life, education and employment. Read some experiences from people with Nystagmus.
Anyone can get nystagmus. Every year hundreds of children are born to parents with no family history of nystagmus as well as to families where the condition already exists, Nystagmus which occurs in infancy has many names including Congenital Nystagmus, Infantile Nystagmus and Early Onset Nystagmus.
In addition, every year hundreds of adults develop (acquire) nystagmus due to accidents or illnesses such as stroke or multiple sclerosis. This is generally known as Acquired Nystagmus.
Nystagmus is associated with many conditions and illnesses. Although we don't fully understand the mechanisms behind nystagmus, experts group the causes under three broad headings:
Many parents of babies and children with nystagmus contact us every year. Our first message is: Don't worry. Nystagmus is not the end of the world. Nystagmus does present challenges, but we can help you overcome them as you will see from this website, our newsletter and other publications. We can answer your questions by email or phone and put you in touch with other parents, with adults who have nystagmus and with medical and other experts. For answers to frequently asked questions about nystagmus click here.
If you're an adult and have had nystagmus since childhood (variously called early onset nystagmus, congenital nystagmus, infantile nystagmus syndrome), you already know many of the challenges it presents -- for instance probably not being able to drive, wondering where to look during job interviews and simply explaining wobbly eyes to others. Many adults tell us how reassuring it is to hear from others how they cope with nystagmus. We also keep you up to date with medical and other developments in our research section.
Nystagmus can also start in later life when it is usually called Acquired Nystagmus (AN) or late onset nystagmus. Like early onset nystagmus, late onset nystagmus has many possible causes ranging from stroke and multiple sclerosis to head trauma and neurological problems. The effects are generally similar to early onset nystagmus with one exception – people with late onset nystagmus are more likely to see the world moving. In some cases, drugs such as memantine and gabapentin can reduce the symptoms of late onset nystagmus. The Nystagmus Network helps by listening, advising and putting you in touch with others who have this condition.
We work closely with professionals in hospitals, optometry, social services and other charities. We can provide the emotional and practical support that hospital staff often have neither the time nor resources for. For instance, we can answer difficult questions about driving and what it's like to have nystagmus. See the resources section of this website for useful downloads.
Nystagmus is the most common form of visual impairment among young people. Specialist teachers of the visually impaired tell us that well over half the children they work with have nystagmus (often with other eye conditions). We can explain what it's like to have nystagmus and suggest strategies to support young people in education with. See the resources section of this website for more information.