We highly recommend the Noah (National Organization of Albinism and Hypopigmentaion) “How we See” video from Amy’s recent blog post Noah Conference How We See on 16th July 2012.
Two online friends in America who’ve been a great comfort since Jack was diagnosed are Ashleigh from “As Makayla Sees It” and Amy from “Through the Eyes of Liam”. Despite Albinism being present in only 12% of patients with nystagmus (in a study by Nagini Sarvananthan – see research published on page 13 of Focus 89 in December 2010 by the UK Nystagmus network), each of our children have recently been diagnosed with it. I think this coincidence has brought us closer together and it’s been very helpful to learn from each other.
In To operate or not to operate 2? I posted;
“As it would be difficult for us to travel to the US to see Dr Hertle, we’ve asked Jack’s doctor if they think he falls into the “good foveation periods” category (to rule out the possibility his eyes may not develop to their full potential if he doesn’t have an operation before age two). We’ll write a follow up post when we know more”
Earlier this month Dad and I travelled to Leicester for eye appointments for Jack and Isaac spread over two days. The primary purpose was to take part in the OCT hand held scanner trial, but it was also to;
– Carry out VEP (visual evoked potential) and ERG (electro-retinogram) tests
– Carry out a visual acuity test to check whether Jack needs glasses
– Check whether Jack has Ocular Albinism
– Find out more about the chances of us/our children passing on nystagmus genes
– Check whether Isaac has nystagmus
We’ve read several posts by parents saying they’ve been advised the optimum age for performing surgery to correct nystagmus is before age two (primarily on the American Nystagmus Network e-mail discussion list and Facebook page). As Jack is 18 months there is only a six month window of opportunity for him, so we’ve sought advice from experts to check we are doing the best we can for his eyesight.