Living with Declining Vision

Ever been at a concert not able to see the band because you’re so far away from the stage but can clearly see hands flailing around you? Well for Melanie Chatfield she has the opposite problem.  When she goes to concerts she can see things further away much clearer than things close to her.

However this isn’t the only thing unique with Melanie’s vision, she has a degenerative retinal disease known as Retinitis Pigmentosa.

Melanie, now 33, was diagnosed with the disease at around 20 years old after going for an eye test because she couldn’t read the board at school.

“They had a look in my eyes and said ‘I think there’s something wrong, you need to see an ophthalmologist’ so I went and had a whole heap of tests done,” Melanie said. They said ‘look you’ve got Retinitis Pigmentosa, it means you’ll lose your peripheral vision and your night vision, and you might go blind’. So as a 20-year-old and being told you’re going to go blind was devastating.”

According to Retina Australia (WA), Retina Pigmentosa is the leading cause of blindness in youths and is the second most common disease causing blindness in adults within Australia.

The rate of going blind differs with everyone.  The deterioration of Melanie’s vision has been gradual.  During the day she can see anything directly in front of her unless it is in the shade or poorly lit with light. The disease occurs when genetic mistakes affect any of the 200 genes relating to the retina which can be hereditary.

“But I’m the only one in my family, so there’s no family history for me,” Melanie said. “I’m a spontaneous mutation the doctor said.”

No one wants to be referred to as a mutation, especially when you're 20.  You just want to be like everyone else.

But at a young age Melanie had to make changes to her life any other person would take for granted.

“I had to give up driving, so I had a driver's licence and had to give up that, which was a huge impact on my independence,” she said. “I had to ask for help which was really difficult, so you have to ask your friends to take you to the toilet.”

Melanie also said the grief associated with thinking you’re going to go blind is awful so she sought out support with organisations such as the Association for the Blind - Guide Dogs WA and Retina Australia (WA).

“But it was difficult because I didn’t see myself as someone that is totally blind,” she said. “When I saw people with guide dogs or canes, it was awful and I didn’t want to be that person. For a long time I was just in denial and I ignored it.”

But Melanie said ignoring it made her life more difficult.  She eventually learnt how to live with the disease and that meant being more open and talking to people about it.

“There’s no treatment or cure for Retinitis Pigmentosa,” she said. “There isn’t anything you can do other than start to change your behaviour.”

Melanie had her computer screen made bigger at work, she got cane training, started catching public transport and got counselling.

There are sufficient organisations and online communities that can help assist people who have been diagnosed with a retinal condition like Retinitis Pigmentosa. Foundations like Retina Australia (WA) tirelessly work to raise the awareness of degenerative retinal conditions and research funds to help find a cure.

Retina Australia (WA) held an inaugural Owl and the Pussycat Ball in October 2010 at the Burswood Entertainment Complex to help raise the profile of the charity and retinal conditions. Melanie said the ball was fantastic, with about 200 guests, and will hold another ball in the next two years. The funds raised from the ball go to research into retinal diseases run through Sir Charles Gardiner Hospital.

“There’s some positive research happening but because it’s such a small field it’s difficult to attract funding to do the research,” Melanie said. “They’re looking at gene therapy and stem cell research. So they’re trying to find ways to protect the cells from dying further or a way to implant cells so new ones can grow.”

But until a cure is found Australians like Melanie continue living their lives one day at a time with their vision gradually declining.

For more information about degenerative retinal diseases visit www.retinitispigmentosa.com.au 

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