People are sharing their nystagmus stories with us this Nystagmus Awareness Day so that everyone can understand what it’s like.
This is Peter’s story …
The ﬁrst part of my story started shortly after the birth of our ﬁrst son in 2005 when the doctor noticed his eye wobble and we were referred to Kingston Eye Hospital. A diagnosis of nystagmus was relatively quick but the conﬁrmation of the underlying visual impairment, Congenital Stationary Night Blindness (CSNB), took much longer and was only recently ﬁnally conﬁrmed via genetics testing (16 years later!!). The journey along the way has taken us from Kingston Eye hospital to Guys & St Thomas, Great Ormond Street and Moorﬁelds hospitals.
The second part of my story started 3 year later when our second son was born – again the eye wobble but we knew that he had an identical condition (at least they both had playmates during the many hospital visits!!).
My story with the Nystagmus Network started with one of those long days at Kingston Eye hospital when we noticed a poster on the wall about the charity. We contacted them and shortly after attended the ﬁrst of many Open Days (this one in Birmingham) where we got to learn so much about the eye condition, meet some of the amazing people who support the charity and other people with nystagmus for the ﬁrst time.
The charity was a source of invaluable information including some life changing advice from the then education advocate Sam Jones. The journey continued with helping to raise money and attending more events. Then 6 years ago, I decided it was time to give something back so applied to become a trustee.
Our story will continue, both boys are currently studying exams (GCSEs and A-levels) and their journeys will take them which ever way they choose – they just need some extra support and consideration.