'It’s not just something that comes with age'

Young mother of three, Leanne started noticing that something wasn’t right with her vision when she was 22. Now aged 27 she wants to raise awareness that macular disease is not just something that affects older people.  

With a young family, she said the condition has started to have a huge impact on her mental health, as she struggles to do things many people take for granted.

She said the worst moments have included not being able to feed her youngest child, now aged two.

“I couldn’t see her mouth to make sure the spoon was going in, and that started to have a massive impact on my mental health,” she said.

Leanne first noticed something was wrong in September 2015.

“My parents have got stripy wallpaper in the living room,” she said. “I was just talking to my dad one day and behind him I could just see that the lines on the wallpaper weren’t straight anymore. That was literally the first time that I thought something wasn’t right.”

After a few scans she received a letter, to take to A&E for further tests and was later diagnosed with punctate inner choroidopathy (PIC) in one eye, a rare macular condition caused by inflammation at the back of the eye.

Knowing very little about the condition Leanne struggled to take the diagnosis seriously.

“I honestly was very ignorant towards it,” she said. “I didn’t think it’d be anything as serious as it is now. I just thought, ‘The optician will be able to give me some eye drops, or medication, and it might just be a bit of inflammation that will go down,’ because you just never really think about your eyes, and how important they are, until you need to, which is a sad reality, you only get one pair! 

“It was probably three years before I sat down with my consultant, and actually had that conversation, about, “This is what your future looks like ” and she had to give me a bit of a telling off, because I think, being young, and otherwise fit and healthy, and having a family to look after, I just thought, it was nothing.

She added: “I don’t think the gravity of it hit me, until I got diagnosed in my second eye in April 2019.”

When her second eye became affected Leanne had three young children and was learning to drive. “I was trying to kid myself into thinking it’s nothing serious, just because I wanted to pass my driving test,” she said. But at the age of 27 she ended up having her licence revoked.

Since her second eye became affected Leanne said the diagnosis has had a huge impact on her life and her mental health.

She said: “When I’ve been at my worst, I’ve got three young children, and it does get in the way of being a mum.

“The worst thing is the blind spots, which are right in the centre of my vision and make it difficult when you’re talking to people. Sometimes you can’t see their facial expression, to make out how they’re taking the conversation.

“I had my driving licence revoked, I lost a job, because, just as I started that, I started having flare-ups, and needed frequent time off work, and it was a new employer, who wasn’t understanding about my situation, and my needs. It has been really difficult.”

Leanne lives in hope that a cure will be found for her condition and wants to raise as much awareness as possible that macular disease can affect people at any age – not just older people. 

She said: “I think that’s one of the hard things that I’ve found, is that people, including doctors, look at you and think, ‘Oh, well, you’re fine, because you’re young.’ So it’s nice to raise awareness that it’s not just something that comes with age. I think a lot of people that don’t know about macular conditions do just presume that it’s just something that happens when you get older.”

She added: “Research is going to make a big difference to people like me. Even if there’s nothing that can be done to make my sight better.

“I love that the Macular Society can help other people to not go through the same kind of struggles, or just to make their journey a little bit easier. And the prospect of things improving for me, as well; that’s something that’s amazing.

If you or a family member has been diagnosed with macular disease, call our Advice and Information Service on 0300 3030 111. Alternatively, find out more about the research being funded by the Macular Society to help Beat Macular Disease.