This week’s theme on the SWAN UK (Syndromes Without a Name) blog site is Nystagmus. This is an incurable condition that sometimes affects children who have genetic syndromes. In simple terms it means that their eyes wobble about, either side to side or up and down, making it very difficult for them to focus on things and use their visual skills to get about in their world.
We were told at Orange’s first visual assessment that he has mild, intermittent nystagmus. This was a huge blow and I really wasn’t expecting it. I had read about nystagmus and thought I could spot it. But I didn’t. And he has it. So there we go.
This week I wrote a guest post about his experience so far with his nystagmus. You can read it on the SWAN UK website here.