A report by John Sanders, former Nystagmus Network UK chairman and development manager, on the recent Open Day of the French Nystagmus Network
Nanterre, Paris, France, Saturday, April 6, 2019
Guest speaker, Dr François Audren tells the 4th Association Mouvement Nystagmus conference early on that visual acuity (VA) is a poor measure of how people are affected by nystagmus. The ophthalmologist recognises that you can have pretty good VA with nystagmus, but still be very “handicappé” as they say in France.
Audren’s observation on VA sets the scene for the afternoon. Almost every topic that comes up during the 4 hour conference has been discussed at length at many of the UK Nystagmus Network’s 30+ Open Days: driving, education, the null point, surgery and genetics among others.
France has, for instance, a similar system to our own registration as sight impaired or severely sight impaired. Instead of a Certificate of Vision Impairment (CVI), you can ask your ophthalmologist for an MDPH (Maison départmentale des personnes handicapées) certificate.
French parents are also just as anxious as British parents about the possible impact of nystagmus on their children. The adults with nystagmus in the room were, I hope, able to provide some reassurance that having flickering eyes is not the end of the world. Yes, nystagmus does present challenges. For example, we struggled to attract the waiter’s attention to get the bill at the pre-meeting pizza. But there are worse things in life.
The question of driving obviously came up, although Paris itself is easy to get around on public transport. The law on driving and nystagmus in France is a bit different from the UK and perhaps more in line with the USA. Some people with nystagmus may – with the help of an ophthalmologist’s letter – be able to get a limited driving licence. This might, for example, limit the times of day and the type of roads they can drive on. But it’s still the case that most people with nystagmus in France don’t drive.
In several ways the conference took me back to the early days of the Nystagmus Network, when no more than 30 people attended and we all brought packets of biscuits to Open Days.
The emphasis in France is still very much on the medical issues around nystagmus. The AMN committee is trying to attract other speakers to talk about education, benefits and employment. But at the moment it’s difficult to find speakers and persuade them to give up a spring Saturday in Paris. Dr Audren backed them up, though, saying that what would probably help children with nystagmus most is better access to support in schools. That’s a sentiment I suspect many parents and professionals in the UK would agree with.
Personally, I was delighted that a short conversation at Nystagmus Network’s Manchester Open Day in 2012 had finally led me to a similar event in Paris. It’s no easy thing to set up a support group from scratch, so well done Christine, Thomas, Cyrille, Marie-Pierre and everyone else raising the profile of nystagmus in France and thank you all for making me so welcome.
To find out more about the Nystagmus Network UK’s Open Day 2019, please click this link.