Life doesn’t stop because you have Stargardt
Seventeen is an age we’re meant to look to the future with excitement and possibility. For Erin Philpot, it was the age she learned she’d face a future without sight.
Erin has Stargardt disease, a rare genetic eye disease that generally first appears between the ages of 10 to 20. It causes the cells in the centre of the retina to die affecting the macula and central vision, leaving only peripheral vision intact.
A year 11 student at the time of her diagnosis, Erin was devastated on hearing her future described with words like; legally blind, no driver’s licence, strained recognition of faces, loss of independence.
The news turned Erin’s world upside down. “At first I was launched into a downwards spiral of emotion – anger, depression, anger, and then even more anger. It was a pretty horrible time. There were times when I didn’t care about anyone else but myself. I was hard on my mum – it’s awful to recall sometimes. Then one day I realised I had to find a way to live with this disease. I started to come up with coping mechanisms to help see me through.”
I started to come up with coping mechanisms to help see me through
A mark of every 17-year-old’s independence is learning to drive, and for Erin it was no different. “The epitome of independence for me was to get my driver’s licence. I carried on learning after the diagnoses, even though I was told my sight would deteriorate quicker than it did. Driving became my all-time favourite thing,” says Erin.
“As my vision worsened after about three years, my licence was taken away from me and the downward spiral began again. It was like starting from scratch.”
Living life to the full
Those early years were hard for Erin, but this hasn’t stopped the now 28-year-old from her living life to the full. Erin’s husband Marcus, who she married in 2014, has been an amazing support. “The only constant for me, when I was in my downward spirals, was my mum and dad, and my wonderful husband.”
Describing herself as hugely independent Erin said that she has never wanted people to feel sorry for her and does her best to not let Stargardt disease impact her life.
“I’ve got a great job as an Assistant Store Manager with a major retailer. Your life doesn’t stop because you have Stargardt’s, but it can be hard at times. I have issues with recognising faces in the street, that’s a massive challenge, and one of the biggest things is constantly explaining to people about the disease. I get asked at least five times a day if I need glasses and I find it’s just too longwinded to explain, so I just say ‘yes I do’.”
Your life doesn’t stop because you have Stargardt’s, but it can be hard at times.
The importance of a support network
Although Stargardt disease is a genetic condition, Erin is the first member in her family with the disease. “Given the genetic link, my parents do feel a lot of blame. But Mum has been my rock and my saving grace. She probes specialists and is constantly on the lookout for new research. And Dad has been my logistical support, driving me back and forth to all specialist appointments. Dad just genuinely believes in me, and in everything I do and I cannot do anything wrong in his eyes.”
Surrounded by love and support from family and friends Erin had until recently preferred to avoid awkward conversations about her vision loss than trying to explain her condition and the side effect.
I hope sharing my story might be the difference one day for another young person diagnosed with Stargardt’s.
“There are so many people worse off than me, without the support network that I have. I hope sharing my story might be the difference one day for another young person diagnosed with Stargardt disease, and although I’m most probably too far gone in deterioration for any research to directly benefit me, I do hope it will help another young person in the future.”