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Bhavna’s story

In September 2015, my son Ethan was diagnosed with Stargardt’s disease when he was just seven years old; a condition we had never heard of. Being told that he was losing his eyesight and that there was no cure or treatment for Stargardt’s disease was the most devastating news we had ever been given. Despite…

Toby’s story

I was diagnosed with Stargardt’s in my mid-teens. It was a big blow, especially as I had to give up my beloved ball sports as my sight deteriorated. Strangely as it now seems, though, I decided to keep my condition secret from my friends and teachers for a long time, and pretend nothing was wrong.…

Robert’s story

I was diagnosed with Stargardt’s in the summer of 1981, shortly before my 21st birthday. On the day of diagnosis I was given the option to be registered partially sighted but declined the offer. I was also informed that, as of that day, I was not allowed to drive anymore; the latter being the hardest…

Yvonne’s story

There are several unique experiences peculiar to living with Stargardt’s disease; some very personal and others played out quite publicly. Through these experiences I learn the truths that mould and guide my existence. Like most Stargardters, I recall needing to look at my classmates’ notes to get what was on the board at around the…

Katie’s story

On the 13th June 2017, I went off to a routine eye appointment that I attended every two years. I thought absolutely nothing of it as I drove there, but thought I had better mention to the optician that I was struggling to focus in low lighting and it was taking longer for my eyes…

Social Meet Up November 2018

In November 2018, Stargardt’s Connected organised another pub meet up in London for the Stargardt’s community after the Sight Village Exhibition in Kensington. This was a fantastic opportunity for people to meet up, chat and share stories and tips.

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