Robert’s story

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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 pill to swallow.

I then chose to spend the next 32 years working and living a “normal life” waiting for a medical breakthrough. This I heard on the local BBC News, “Look North”, where I heard about a local man undertaking a Stem Cell safety trial. On hearing this I realised that this was what I was waiting for. Now, five years later, the trial is over but in the intervening years I have met some wonderful people, one such person is Bhavna Tailor.

I met Bhavna at the 2015 Retina Day where she and her husband were looking for any information to help their son who had just been diagnosed. About a year later I was asked to help in the set up of the first Stargardt’s Day in 2017 where I got to meet the other panel members that went on to create Stargardt’s Connected. They regularly meet to plan and forge a path for all who are affected by Stargardt’s, wherever they may be.

There are a few ways I have learnt to cope with the Stargardt’s. The first took more than 30 years to learn and is the simplest. Just be honest and open about your sight, the people around you will probably know that you are having difficulties but they will be polite and leave you alone, even if you could use some help.

The other two are practical items and they are a magnifying glass and a small daylight pocket light. I feel completely lost and vulnerable without them. I feel at a great disadvantage in situations with the sighted if I don’t have them to hand.  The magnifier is a 10x Jewellers loop – completely the wrong type but in 1981 it’s all I had, and this is what I have got used to. I guess that one with a light would be better but it doesn’t feel right.

I have been working as an equipment centre coordinator at the The Sheffield Royal Society for the Blind “SRSB” since 3rd March 2013.