‘We need to make more people aware of macular disease’

Posted: Monday 27 July 2020

"I didn’t tell anyone for about a year that I had this eye condition. I was in complete denial.”

Nilima was diagnosed with Stargardt in 2018. But, at the age of 27, and training to become a solicitor, she remained in denial about her condition.

“I was really struggling with work, and everything else, but I still denied it,” she said. 

Now she and her husband Emir have committed to raising at least £3,000 a year for research to beat macular disease and raise vital awareness.

Almost a year after Nilima’s diagnosis her husband Emir did some research online and found the Macular Society’s annual conference and suggested they attend. She said, although she was reluctant to go, this was when it all changed for her. She was finally able to accept what was happening to her sight.

She said: “I went to a Macular Society’s conference, and that was when everything changed for me. Initially it was very overwhelming to be around so any people with the same condition. At the time, I didn’t even want to be there. But, it was like a switch; the next day, after meeting so many people and taking away so much information, I actually accepted I’ve got this condition, and I need to get help. I realised I needed to do something about it. The conference was a big trigger for me. It finally made me think I need to get help, mentally, physically, emotionally, everything, and stop pretending like this isn’t happening.”

Fast forward nearly two years and the 28-year-old solicitor and her husband have decided to host an annual event to say thank you to the Society and raise vital funds and awareness of macular disease.

I have many educated – professional friends and family, but a lot of them didn’t even know what this condition was, so more people need to be aware of it,” she said.

The first event took place before the UK went into lockdown earlier this year and raised nearly £3,000.

Nilima said: “I realised after the conference that I needed to let people know about the Macular Society, so that the Society can support everybody else like they helped me. So me and my husband decided that we will try to do this every year.”

The event, which raised nearly £3,000, took place at Chicheley Hall in Newport and visitors enjoyed henna hand painting from professional henna artist Mehndifique, quizzes, and an indoor bouncy castle provided by Wacky Bouncers. There was also a raffle with prizes including a picnic hamper, a selection of jams, and a mini pool table.

“It was just going to be 50 to 60 people originally but within three days the tickets sold out and we ended up with 100 guests," Nilima said.

They were overwhelmed by the support from local businesses and plan to hold a similar event next year. However, due to the coronavirus they are also coming up with an alternative plan, in case restrictions remain in place.

Nilima added: “Loads of people have given us loads of ideas, like virtual quizzes, and things like that. We don’t have any concrete plans yet but we definitely want to do something each year.

“If more people were aware about this condition, and more people were doing research, one day they’ll find a cure. But, at the moment, I just feel there’s not enough research, there’s not enough people invested in it. I know there’s a lot more than there was ten years ago, but it’s still not enough.”

If you would like to hold your own fundraising event, find out how.