I have Ocular Albinism, this is a genetic condition, and I was born visually impaired. It’s quite rare, as it is a form of Albinism that primarily affects my eyes. Although I do share some of the characteristics of other forms of Albinism, including very blonde hair, pale blue eyes and fair skin.
So how does ocular albinism impact on how I see?
The most important thing to understand is that my vision is constantly variable. I have good days and bad days, and my vision is affected by lots of different factors. Sometimes I can read a book and sometimes I can only see colours and shapes.
There are basically five key things that are a bit problematic with my vision.
Visual acuity is essentially how well you can see details. Opticians measure your visual acuity when you go for an eye test and read out the letters on the board. I have quite poor visual acuity and I also have myopia aka short sightedness.
So what does this mean?
Firstly the stats: without my glasses on I see at 6 metres what a fully sighted person would see at 60 metres. With my glasses on I see at 6 metres what a fully sighted person would see at 18 metres.
Note, this is on a good day. Often my glasses stop being useful and my vision reduces significantly and I might as well not be wearing them.
Generally, I struggle to read signs, recognise faces or see details more than two to three metres away. It’s like I’m in a bubble and beyond the bubble it’s all just blurry.
Nystagmus is the involuntary movement of the eyes. My eyes flicker constantly and I can’t control it. The pathways between my eyes and my brain that control my eye muscles and the movement don’t work very well. I do not notice the movement the majority of the time.
It’s more like things go in and out of focus a lot, like when your iphone camera is being slow! My nystagmus means my left eye gets a bit ‘lazy’, it sort of rolls or drifts around. Therefore, I have to concentrate quite hard to focus on details, and when I’m tired I do notice the movement. Words on pages skip about, the horizon wobbles, and eventually the movement can make me dizzy or even travel sick.
Here is a short clip from a fantastic video by the totally glamorous Emily Davidson aka Fashioneyesta. Emily has Nystagmus, and in this video she explains how we see! Emily is not only a style guru but an amazing advocate for the visually impaired and you should totally check out her blog https://fashioneyesta.com/
It sounds technical, but basically the back of my retina didn’t grow properly. The fovea is the dip in the back of your eye where your rods and cones live. They receive the light and information then send it to your brain. Except mine doesn’t do that very well, hence the nystagmus and the poor visual acuity.
Depth perception and peripheral vision
So the nystagmus, underdeveloped fovea and poor visual acuity combine to give me quite bad depth perception and peripheral vision.
Depth perception is how your eye understands 3D objects, I only have useful depth perception about 10 centimetres in front of my face, which means it’s not that useful! Steps and uneven surfaces are really tricky, hence my white cane which helps me feel changes in surfaces.
Peripheral vision is the vision you use to see things at the side without turning your head. I do not have peripheral vision, and my best vision is in a central field, although I tend to use the centre-right field of my vision most of all. Other conditions which also involve a lack of peripheral vision, like retinitis pigmentosa, are often described as tunnel vision. I do not experience tunnel vision, it’s more like I’m looking through a letterbox all the time.
Most individuals with albinism have a degree of light sensitivity. Bright light, indoors lights or sunlight can be really problematic for me. Strong light is quite painful, it floods my eye and as I don’t have enough pigment in the back of my eye, the light just bounces around. This means when I’m in bright light I can’t make out details at all, and everything is pretty much just shapes and colours. If it’s very sunny I can only see light and dark shapes. It takes my eyes a long time to adjust to different lighting levels, so coming into a room after bright sunshine can be very disorientating. This is why I wear my sunglasses a lot, and sometimes a hat, even indoors!
I do experience eye pain, this is usually when I’ve over strained my eyes by using my glasses for too long, and spent too much time looking at screens. Sometimes I get nerve pain when my nystagmus is very bad, and that is extremely uncomfortable.
There is no cure for my sight loss. The combination of the different factors means that I’m wired this way and a retina transplant or other amazing medical procedures would not work for me. One solution I’ve been offered is regular botox injections INTO MY EYES to try and stabilise the nystagmus. Unsurprisingly I turned that down.
Also, as much as this might surprise people, I’m happy with my visual impairment. It’s how I’ve lived my entire life and it’s part of who I am.
So in summary, that’s how I see. It’s complicated, variable and unique, just like me!