Out in the Open

Knowing you will lose your vision but not knowing exactly when

At thirteen years of age, Kirsty James was diagnosed with Stargardt disease, a genetic disease that leads to vision loss. She lived in fear and denial for years, knowing that one day she would eventually lose her sight.

Kirsty James says one of the hardest things was not knowing if this was the last time she'd see her face

Kirsty James was 21-years-old when she lost her sight. (Submitted by Kirsty James)
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Kirsty James still remembers the day her whole life changed. 
Kirsty James before she was diagnosed with Stargardt disease, a genetic disease that leads to vision loss. (Submitted by Kirsty James)

She was 13-years-old when she was diagnosed with Stargardt's disease, a genetic disease that leads to vision loss. 

"I was upset, devastated and filled with dread of, you know, what's my life going to look like. Just this black sort of cloud arrived around me," James told Out in the Open host Piya Chattopadhyay. 

James says one of the worst aspects of it all was not knowing when she'd lose her sight.

"Every day, I look in the mirror, cleaning my teeth, thinking, is this the last time I'm going to see my face?"

Seeing it all

James dealt with the fear of eventually losing her sight by starting to live as if everyday was her last. 

"I just kept thinking my life's going to be over when I go blind. So I have to do these things now." 

I couldn't see my face. I couldn't see to leave the house. I became housebound and very, very isolated and depressed.- Kirsty James

It was a thought James now knows was ill-informed, but one she strongly felt then. So, she travelled the world. She went to every party and music festival. She never wanted to turn down an opportunity to have fun.

"Anything that was pushing the boundaries that I thought you can't do when you have sight loss, I was doing."

She also says she lived in denial and didn't want to think about losing her sight. That is until she was 21-years-old and the day she'd been dreading since she was a teenager arrived.

"I woke up this one day like I do every day. I opened the curtains and I looked out the window...But when I looked out this particular day, I could no longer see the doors and the windows [of the church next door]."

The change was debilitating.

"I couldn't see my face, I couldn't see to leave the house. I became housebound and very, very isolated and depressed."

This isn't happening

James started having hallucinations.

"That was a scary time. All these weird sorts of happenings. I would see like the street and then the surface would change and look like water. It freaked me out."

Eventually, James was diagnosed with Charles Bonnet syndrome. It's a condition that affects people with sight loss, where the brain tries to fill in the missing vision, causing hallucinations.

"What was so sort of poignant about that time, was it made me talk about my sight loss. I had to because I had to work out what was a hallucination, what was reality, which meant people had to help me with that," she said.

"That was the start of my independence building and growing..."

James says she now realizes that living with sight loss doesn't mean she can't do things, she just does them in a different way. She tries to help others realize that by volunteering as a mentor for young people with sight loss and also by working with the Royal National Institute for the Blind.

"I just really want to help people not feel how I did for all of those years."

This story appears in the Out in the Open episode "Sense of Dread".