Just after my diagnosis last year, I heard about a Stargardts picnic that was happening in Hyde park, where lots of people with this disease got together to meet others going through the same thing. This time last year I was not ready to meet anyone else with Stargardts, and the opportunity passed me by. The picnic was organised again this year and by now I was desperate to meet others with the same as me as sometimes this disease makes you feel like the only person in the world going through vision loss. A few years ago, my anxiety wouldn’t have allowed me to go and meet a group of strangers, but this was different, I was different, I had something massive in common with this group of people and something I was desperate to talk about.
The day came around and my husband drove me into London and our little boy came too. Meeting up with so many others with Stargardts, of different ages was amazing. I met so many inspirational people that day, who I hope to meet up with again soon. It made me realise that this disease won’t stop me doing what I want to do and living my life, it gave me the motivation and strength to get on with things and that I would be ok, it was the reassurance I needed, and I can’t wait for the next one 😊.
