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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.…

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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…

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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…

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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…

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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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Nutrition Project and Art Therapy Session September 2018

In September 2018, Stargardt’s Connected organised a nutrition chat for Stargardt’s families. The discussion was led by Dr Rosie Gilbert from Moorfields Eye Hospital and Dr Andi Skilton from NIHR Biomedical Research Centre Moorfields Eye Hospital. A summary of the discussion can be found on the Nutrition Project page. Meanwhile, while the parents chatted, the…

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