“I'm still really scared of losing what sight I have left”

Kate’s first experience of her rare macular condition happened 16 years ago, when she suffered a bleed in her right eye. It left her with peripheral vision only, though a timely injection halted any further sight loss.

By 2021, Kate's left eye, already scarred from treatment and surgeries, bled again. She now relies on her right eye but her vision is limited.

Kate has punctate inner choroidopathy (PIC) - a rare condition caused by inflammation at the back of the eye. It is more common in women, and people who are short sighted.

PIC causes small patches of inflammation in the retina and choroid. Sometimes a new abnormal blood vessels grow through the inflamed spots and leak, which can lead to a sudden loss of central vision.

“I lost my central vision in my right eye but then that’s just how it was for the next 12 years,” she said.

“I'd forgotten about it. It was what it was, but then it all started in my left eye instead.”

She added: “I started getting patches of disappearing vision in the middle of my left eye and it wasn’t until I’d lost almost all my central vision that the hospital were able to confirm this.”

Mental and physical toll

It has led to a journey of immunosuppressants and steroids to try and control Kate’s inflammation, although these do come with their own mental and physical side effects on the body.

Kate, 45, said: “It’s difficult because after all the injections and medication my sight has just been constantly deteriorating. The medication itself is a pain. The immunosuppressants, they work really well for some people, but then I've had repeated chest infections and other things because of being on it.

“It’s the emotional side which messes with your head, because you don't know when you're going to have another bleed in my eyes and if you do have a flare up, just how much vision you're going to lose, or whether you're going to get it back.”

Impact on hobbies

Kate is a keen swimmer but no longer takes part in open water events. She has also stopped trying to read and while she is grateful for the support of others, she also relies on other people to get around.

“PIC has wrecked everything,” she said. “I'm very lucky that I've got a brilliant partner and a couple of really close friends and my family are supportive. However, without wanting to sound overdramatic, this has messed up my whole life.

“I used to run, I used to enter a lot of open water swimming events, but I've lost my driving license, I lost a job. I can't go out on my own after dark and I very rarely go out on my own during the day.

“I can't really get places anymore unless I get lifts from people, and I don't like to be a bit of a burden. I don’t want to be the person where it’s like ‘oh it’s my turn to give Kate the lift this week’ so I do cover a lot of things up.”

While she is not as independent as she would like to be, Kate has become more resilient because of the challenges she has had to overcome.

Becoming a stronger person

She said: “I can still go out for a walk somewhere familiar by myself and it’s proving that I can deal with things I didn’t think I’d be able to. I used to suffer from anxiety but I’ve managed to go through what I have and I’m a stronger person now because I’m living with PIC.”

Kate, who works in advocacy, has had counselling and employment support from various sight loss organisations, and through the Macular Society she has joined an online condition-specific support group for people with PIC.

Support from other people with PIC

“That has been the best support,” she said. “PIC wrecks your eyesight slowly and not necessarily in any obvious order or timing, so I’m constantly thinking ‘what’s going to happen next, will the treatment work or not?’ I’ve relied on that emotional support and the group is an extension of that, being with people who know how it feels.

“And support has made an awful lot of difference to me and being part of the Macular Society group makes you feel more hopeful, because you can explain to others how you feel, and get advice.

“If you can understand what it is you're going through, then that can help you feel like you're on top of it. For me there’s something in that because PIC is something you have little control over; you don’t know when a bleed is going to happen, so to have those discussions about treatments or to know more about it, it changes how you feel about it all.”

The Macular Society’s PIC support group meets via Zoom on the first Wednesday of every month, between 7pm-8pm. Contact Colin Daniels on 01603 937 449 or email colin.daniels@macularsociety.org for details about how to join.