Thank you to everyone who joined us for the Nystagmus Network February Forum for Adults living with Congenital Nystagmus.
Ian, our Information Support Officer made sure that everyone knew what an ECLO (Eye Clinic Liaison Officer) is, how they can help support you and where to find them. Please contact Ian at firstname.lastname@example.org if you need help finding your ECLO.
The Nystagmus Care Pathway
Thank you for sharing your thoughts on the Nystagmus Care Pathway. These have been passed to Jay Self and the NUKE (Nystagmus UK Eye research group). We hope that the guidelines will be endorsed and published, through the Nystagmus Network website and elsewhere, very soon.
There was some discussion of Charles Bonnet Syndrome, where people with limited or failing sight experience hallucinations as their brain appears to be trying to make up for the lack of clear images coming in through the eyes. Some people with nystagmus, especially if they also have other eye or neurolical conditions, experience CBS. Talking about the ‘visions’ openly and rationalising them can help alleviate the symptoms. Please see Esme’s Umbrella for more information and support.
Laser surgery and ICLS
The Nystagmus Network does not recommend the use of laser surgery to correct refractive errors (short sight) in people with nystagmus from non NHS providers.
We are aware of a case where a patient with nystagmus has successfully undergone intracorneal lens (ICL) implantation in New Zealand but understand that this treatment remains at the trial stage and is not widely available.
Those attending were offered the chance to join a Gmail group for adults living with congenital nystagmus so they can keep in touch with each other more easily by email between zoom calls. The charity will also contact them via this group to invite you to future meet ups and keep you posted on nystagmus news and updates.
Please do join the Nystagmus Network Facebook group for adults. It’s there for you to help you connect with others.