I was shocked to find out both my daughters are losing their vision but we will not give up on finding a cure
A mum from Hurst Green has been left shocked and upset after both her daughters were diagnosed with macular disease which affects the middle part of your vision.
Four years ago, Louise Papermichael’s eldest daughter Sarah, 43, started to get a ring in her vision. She was diagnosed with bull’s eye maculopathy, a rare form of macular disease affecting her sight.
The condition is believed to have been a side effect of treatment for lupus – a chronic autoimmune disease.
Then earlier this year, Louise’s youngest daughter Charlotte, 37, was told she likely had another rare macular condition known as Stargardt disease.
Unlike bull’s eye maculopathy, Stargardt is caused by a tiny alteration in a single gene.
She is now awaiting further tests in September.
Louise said: “As their mum it’s been shocking and upsetting. You don’t expect anything to happen to your kids, and the thought of going blind is devastating.”
Louise, 67, works as an ambassador for skincare range Tropic, will be hosting her own home-baked cakes, raffle and coffee morning this Saturday between 10.30am-1pm to raise funds towards the much needed research.
She will also be donating 10 per cent of any Tropic sales on the day to national sight loss charity, the Macular Society.
Louise, added: “With both my daughters having these conditions I have been doing a lot of research myself and I want to help in any way that I can to help get more money to help research into macular disease.
“There seems to be such a lack of awareness of macular disease in young people, so I want to help change that.
“If I can raise some money for the Macular Society and help others, then I feel less helpless.”
The deterioration in Sarah’s vision stopped progressing as soon as she came off the Lupus treatment, but she does experience sparkling lights.
Concerns remain over Charlotte’s future sight also.
The family had been on holiday in 2024 when Charlotte realised she could not see the colour of her tan depending on which eye she was using to see.
Then when winter approached, she also found it hard to drive in the dark due to dazzling lights from other road users.
There is currently no cure or treatment for Stargardt disease, but since April the family have felt reassured after finding out about ongoing research into the condition, including projects funded by the Macular Society.
Macular disease, which causes central vision loss, is the biggest cause of sight loss in the UK. Nearly 1.5 million people are currently affected and many more are at risk, with around 300 new diagnoses every day.
There is still no cure and most types of the disease are not treatable. AMD is the most
common form of macular disease, affecting more than 700,000 people, usually over the age of 50.
For more information on macular disease and to get support, call the Macular Society Helpline on 0300 3030 111, or visit the website.