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Laura from Leeds, England

Laura’s Story – As of June 18, 2009

Onset of Stargardts…
I was first diagnosed in late August/early September 2008. I was working eleven hour shifts at the time as a Web Editor so sitting in front of a computer for long periods of time with few breaks. I started to suffer from severe headaches most days if not every day; some days they were that intense I couldn’t function. I didn’t really think too much about it for a good few months, I was just taking ibuprofen to get me through the day. I eventually decided to book myself in for an eye test as I thought I might need glasses. The Optician saw an irregular pattern at the back of the eye and referred me to the eye hospital. I was told to return in 6 months due to the fact that the Doctor didn’t know whether it was something I’d always had and wanted to monitor its progression. I wasn’t overly keen on the idea of waiting for 6 months so decided to go privately. I got an appointment privately with an eye specialist, underwent several tests and was diagnosed on the day.

To find out I’d developed an hereditary eye disease at 25 years was admittedly a lot to get my head round, especially seeing as my vision has always been good. Being told there’s very little I can do to help the situation made it even more daunting. Thankfully I’m not a smoker, I love keeping fit and I manage to maintain a healthy balanced diet 99% of the time. The only thing I’ve had to try and change is making sure I get more sleep of an evening.

I found out on the Wednesday morning and my parents suggested that I go and visit my boyfriend in Berlin and kindly paid for me to do so. It was just what I needed. I decided to write all of my friends a message to tell them the news as my boyfriend and I decided it would avoid the need to talk about it in social situations. The last thing I wanted was to have to start up a conversation about it in a middle of a club when I’m on a night out. It was a very emotional weekend but we managed to have some fun regardless.

Time to heal…
It has taken several months to get my head round things and a lot of adapting. After the period of intense headaches, I went through a phase of feeling really under the weather. The Doctor suspected I’d been suffering from acute anxiety attacks as a result of much of the subconscious concern surrounding my condition.

The aspect I’ve found the most challenging is the rapid deterioration in my night vision. I’d always been brought up to think that carrots help you to see better in the dark. Now I’m told I’m to steer clear of them. I also went through a period of seeing things at night that weren’t actually there. Frustrating as it has lead to me feeling quite vulnerable in situations when I’m alone in the dark, situation when I really don’t need to feel that way.

I dj in my spare time and have recently started to produce my own music (lots of fumbling round in dark spaces – although I now carry a mini torch with me so it’s fine). The news came at a time when I was extremely stressed out with a new marketing job and worried about my future as a dj/music producer. I was also worried about the consequences it was going to have, not only on my ambitions but also on my relationship with my boyfriend. I knew that it would be an almost equally scary concept to get his head round given that we had talked many a time about our future plans at this point. I’m extremely fortunate to have him in my life as he was more understanding than I thought humanly possible and has been my absolute rock ever since.

Ever since finding out, I try to ensure that I eat 5 portions of fruit and vegetables a day. The specialist advised that I try to vary the colour where possible so I endeavour to do so when i can. I’ve also started to wear sunglasses outdoors at all times. I find it helps. If I don’t do so, the bright spots in my vision worsen and the rest of the day ends up being a quite a struggle. I’m also trying to do between 30 minutes and an hour of exercise either before work or once I finish work. I definitely feel an improvement in my vision the more regularly I’m able to make it to the gym.

9 months on…
I try to tell myself not to think about it too much and to let it rule my life. I know that worrying about it isn’t going to get me anywhere. I try to remain as positive as I can although I do have my frustrating days. It’s extremely hard when you’re looking through your eyes every minute of the waking day. They feel so radically different by the day at times making it even harder to shut off. I just wish I knew what made them that way. There doesn’t seem to be any pattern to it whatsoever. It is getting easier however. I find it much easier to talk about it now, both with family and friends. I think if I didn’t, I’d go insane. It’s the reason why I’ve recently started registering myself on various forums as I’m finding the more I’m able to talk about it, particularly with other Stargardts’ sufferers, the easier it’s becoming.

Something to strive for…
In 5 months, I shall be running the Marathon in Florence, Italy. It was a Christmas present from my boyfriend, the most thoughtful present I’ve ever received. It is something that we have always wanted to do and given that I’ve been told to exercise as much as feasibly possible, it is something exciting to look forward to and keep me focused. I’m counting the days until I can pass that finishing line with him. Once I’ve done that, I’ll be safe in the knowledge I can achieve anything.