A woman holds her head in her hands and appears o be in some discomfort.

Living with Acquired Nystagmus and Oscillopsia?

The Nystagmus Network runs a virtual support group where people living with Acquired Nystagmus and/or Oscillopsia chat together on email and on zoom to share their experiences and try to find answers together.

If you’re living with AN or oscillopsia and would like to join the group, you’d be most welcome. 

At our recent virtual Open Day we were lucky enough to be joined by Professor Chris Harris, a leading UK expert in AN and oscillopsia at the Royal Eye Infirmary, Plymouth. Chris recorded a presentation for us, which you can view here and then took part in a live Q+A session with our group on 3 October.

Since then we have continued to reach out to more people living with AN and Oscillopsia so that we can support Chris in his research endeavours. We are gathering a sizeable ‘patient’ group together and are collating meaningful data on causes, symptoms, treatments (conventional and alternative therapies, helpful or otherwise) and evidence of the effects of these conditions on general wellbeing, including mental health.

We are also writing up and recording your stories and drafting a questionnaire to help us collect even more information.

All of this will enable Chris to strengthen his applications for further funding for research into these debilitating and often life-changing conditions.

If you would like to be included in invitations to all future zoom get togethers for people living with Acquired Nystagmus and Oscillopsia, please contact us here.

At our most recent online meeting we were joined by people with experience of new drug and surgical treatments.

Our next call will be in January when we will share an update on the work we have done so far in our evidence gathering.

If you would like to join our virtual AN support group, please contact us here and we will be happy to introduce you.

Please do help us with this exciting new project. We look forward to having you with us.

Chris Harris sits behind a microphone and prepares to speak.

Do you have Acquired Nystagmus or Oscillopsia?

We need you!

The Nystagmus Network is supporting Professor Chris Harris and his team at the Royal Eye Hospital, Plymouth to investigate further Acquired Nystagmus and Oscillopsia.

If you have either or both, we’d love to hear from you. You can help us develop a further research study into these complex, life changing conditions.

We can also offer you support.

Please contact us today

Watch a video message from Chris here

Join our AN Facebook group here

An image shwoing the Nystagmus Network eye logo and the words Nystagmus Network Acquired Nystagmus and Oscillopsia Facebook Group, call 01427 718093, www.nystagmusnet.org