"It's valuable to come together with people who understand what it is like"

Posted: Tuesday 27 June 2023
Jane Tidy laughing

People living with punctate inner choroidopathy (PIC) will now benefit from a new condition-specific support group which has launched online.

PIC is a rare condition caused by inflammation at the back of the eye more commonly seen in young women and short-sighted people.

This online group is the latest condition-specific support network to be provided by the Macular Society, which is aimed to help people understand their diagnosis and speak to others sharing similar experiences.

This is a key factor for Jane, 50, who has PIC in both eyes.

She said: “PIC is more well-known now and even 10 years ago treatments felt like a bit of a suck it and see method. But now we have a group where we share information and really it feels right to have a specific group with more and more people diagnosed with it.

“Unfortunately there is no miracle answer or cure and understand this is something you have to live with. It’s about managing it to fit your life so it’s really, really valuable to come together with people who understand what it is like because they are going through it as well.

“I think it’s going to be a great group and it’s great that PIC is more recognised.”

Colin Daniels, manager of the Macular Society’s Working Age and Young People’s Service, said: “I’m delighted that we have been able to provide a new online condition-specific service, this time for people who have been diagnosed with PIC.

“It’s a safe space for people to meet others with the same condition and having that opportunity to open up to others who understand exactly what you are going through is invaluable.

The virtual PIC support group will meet monthly via Zoom, on the first Wednesday at 7pm. There is no need to register, simply follow this link to be taken to the meeting on the date and the time it starts.

The Macular Society’s condition-specific groups aim to provide vital support to those living with rare macular conditions. There are existing groups for Best disease, Sorsby’s fundus dystrophy, diabetic macular oedema and myopic macular degeneration.

Join the online, condition-specific community.