Geologist overcomes genetic eye condition with help from charity
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A geologist who was left unable to drive after being unexpectedly diagnosed with a genetic eye condition has praised a local charity that helped her regain her independence.
Dr Valerie Goggin, 56, from Aberdeen, reached out to North East Sensory Services (NESS) after being diagnosed with retinitis pigmentosa (RP) in 2015. Affecting around one in 4,000 people in the UK, RP is the most common inherited eye condition. For the vast majority of people diagnosed, there is no effective treatment or cure. It affects the light sensitive cells in the retina at the back of the eyes, which over time leads to progressive vision loss. Cases sometimes occur where there is no family history of the disease. The first symptom is often being unable to see as well in dim light, such as outside at dusk, as well as problems with peripheral vision which can cause unexpected bumps or trips.
After contacting NESS, Valerie received invaluable support, including help with adapting her work set up, sourcing helpful IT equipment, and sessions with a social worker. NESS supports thousands of blind and deaf people, and those with visual and hearing impairments, across Aberdeen, Aberdeenshire, Dundee, Angus and Moray. The charity’s main objective is to help people with sensory loss to live as independently as possible.
Recalling the first time she noticed something was wrong with her vision, Valerie said:
“All of a sudden I found that I needed my phone torch on while leaving a dim area like the cinema – I just could not see well in the dark. While I was out running, I would start to get strange shimmering lights in my eyes. I also started bumping into door frames unexpectedly. I really had no idea what was happening to me. Vision loss was not something I was expecting. There is no such condition in my family.”
The diagnosis had a significant impact on Valerie, her husband and three sons, who at the time were aged five, seven, and nine.
She was asked to inform the DVLA about her limited field of vision, and was soon told that she must stop driving altogether. She said:
“It was a huge challenge. Friends and neighbours rallied around to help with lifts for our boys’ busy sports schedules, for which I will be forever grateful.”
Over the years, Valerie said she received immense support from NESS, including a social worker who allowed her
“to voice my worries and fears and help seek solutions”.
Valerie outdoors standing on a pathway with a red cane in her hand. There are trees in the background, grass on the left and a grassy hill on the right side.
As her vision declined further, she decided to do cane training through the charity, despite having major reservations about using one. She said:
“It has been something that has always filled me with dread and something I never thought I would have to do. But working with NESS has been very supportive in that it has helped me understand the various cane types and has taught me the essentials. It could have been traumatic, but instead I have learned to have fun learning the different tools and techniques."
"I have learned to accept that using a cane is something that helps me now and will most certainly help me in the future, despite how difficult it is to naturally adapt and use daily. It has become a very useful mobility aid, as I still have useful central vision despite significant peripheral loss. I struggle going down steps, especially in the Granite City where pale grey steps tend to be everywhere. Learning to use the cane has helped me overcome some of these difficulties and allow me to feel more independent.”
Now gaining confidence in using a cane, Valerie plans to get a chic and colourful mobility aid which will
“feel more like an accessory and less like a symbol of a disability”.
She said:
“It helps if canes have more design and colour choices. I don’t feel like I am just a disabled person, but someone who has a sense of style with a mobility aid. We live in an ‘abled world’ and I face daily ongoing challenges. I am grateful for my remaining vision, and try to make the most of it. Gentle exercise, sea swims with friends, yoga and being in nature are ways in which I have developed resilience against this disease.”
Carla Marchbank, statutory services manager at NESS“Val’s story shows us the journey some people experience learning to live with vision impairment. We try to be around for them while they are on their journey, and while they need different sorts of support at different times. Val seems to have appreciated the range of input from different members of the team as she has adapted to her new circumstances. She has shown great resilience and I am proud of the role our staff has played – we will of course continue to be here to support her in the future.”
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