My Health Experience: ‘Going blind won’t be the end of the world’
I have a hereditary degenerative eye condition, Retinitis Pigmentosa. I have a restricted field of vision during the day. It’s down to 20 per cent vision. In the dark, I have night blindness so I need to use a cane.
The rods in your retina perceive light. With this condition, the rods gradually die off, starting at the periphery and working inwards. Obviously, this means no light is being perceived.
There are different forms of the disease in terms of how fast it progresses. It can lead to complete blindness. I know that my maternal grandfather lost his sight to it. I’m not sure at what age exactly but it was between 40 and 50. I’m 27 now.
Family eye problems
My mother did a bit of research when I was three or four. Because of her father’s blindness and other instances of eye problems in her family, she brought me to an ophthalmologist in Dresden.
Retinitis Pigmentosa was diagnosed straight away. I wasn’t told immediately. But there was a class trip in primary school which involved a hike late at night. My mother came along and helped me. That was when I was about seven.
During the day, I’m fine although my restricted field vision means I might stumble over a sign or a chair. Being in dark environments like parties and pubs can be a problem because it’s difficult to actively engage with people you can’t see. It can lead to isolation.
It took me a couple of years to get comfortable telling people I need help. It feels like a weakness.
Sometimes, I have to admit it to strangers. That’s more difficult than telling friends. But being upfront with people takes away a lot of pressure. I don’t have an issue going to the pub now as my friends will help when they see me coming in the door.
I wear normal glasses for sharpness of vision. They don’t change anything about the peripheral sight problem. There’s no treatment for what I have at the moment. Several approaches are being looked at.
Gene therapy is one approach and there’s also research into the implantation of a chip on the retina. I’m hoping to get involved in some clinical trials that will be happening soon.
Last year, I went to a retina conference organised by the Fighting Blindness Charity. They were saying that there might be a workable gene therapy approach by 2017. I remember going to an ophthalmologist in Germany when I was 20.
He said if I was a rat in a laboratory, I could be helped. It was a strange way of putting it. I knew from the start there was no cure.