My Health Experience: ‘Going blind won’t be the end of the world’

Mon, Sep 23, 2013, 14:14

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.

The condition does jumps once in a while. It’s not a linear progression into blindness but it will continue on and on. But at the retina conference, I heard that only 8 per cent of people over 60 with the condition actually lose all their sight to it. I was quite surprised at that figure.

Legally blind

Obviously, if you have only 5 per cent sight left, it’s almost like you’re legally blind. You’d be restricted but you would still be independent enough to walk about on your own. According to German law, I have a 70 per cent disability.

I’m used to it. I did basketball at lot when I was in high school but I struggled with that when I couldn’t see the ball anymore. Now I do rock climbing with a group at University College Cork where I’m studying. That’s a lot of fun. I run as well and walk for leisure.

I fundraise for Fighting Blindness and walked from Dresden to Cork during the summer. I raised €750. I walked during the day and by the time it got to nightfall, I was always in a camp or at someone’s house. I never had to walk in the dark.

My studying is going well. I have an issue if there’s a PowerPoint slide with black or dark green text on it. But usually it’s fine and I can read books normally.

Fighting Blindness provides counselling for people affected by sight loss. I haven’t had counselling. I think I’m okay. I’m not restricting myself in terms of social encounters. The most important thing for me is not to stay at home in fear of something happening if I go out. I really don’t feel I need counselling at the moment. Ask me again in 10 years.

What I have is a hidden disability. I’d prefer if it was more obvious. The progression of it can be related to stress. I don’t get stressed easily. I don’t really worry about my condition. There’s a lot of research being done and I’m hopeful it will lead to treatment in the future. There are things you can change and things you can’t change.

Not the end of the world
Even if I do go blind at some stage, it won’t be the end of the world. It would be a huge adjustment. Maybe I’m being unrealistic saying going blind wouldn’t be a big thing. I’m sure people who are blind are frustrated by a lot of things. I know my grandfather had moments of despair.

Basically, I’m pragmatic. I can raise funds for Fighting Blindness and I can raise awareness.

In conversation with