Ted's Time

Hi, it’s me again, Eddison here for another column and today I am going to tell you about Ted’s time! The time when the sun goes down and I am safe to go outside.



With Autumn officially here, and the summer behind us most people are dreading the long, cold and dark winter ahead. But not me, this is when I get to truly come alive!


The change in season bring with it, two important things for people like me with xeroderma pigmentosum.


  1. Colder weather, which means it is more comfortable wearing my hat for longer during the day (just need to control the misting up-see my top tips below).

  2. Early nights, when the sun sets earlier giving me more time outside WITHOUT my UV protection-Ted’s time.

Teds time is when I go to magical places like the beach and the park and lot of other things like that all free of my restrictive protective stuff. It is so fun, and all after dark!


The down side is that at this time of year when I can be free and go outside without my protection it can be really cold for our adventures, but even when the rest of my family are wrapped up in layers, I try and wear shorts, so I can feel the breeze and air around me.


My school arrange a special invitation only football club at this time of year, after school so that I can take part in one school sports activity without my hat on. My TA constantly checks the light with my light meter while I am playing, and when hits ZERO she gives me the signal and I strip off my hat and gloves.


When the days are their shortest I get about 10-15 minutes of play free from my protection! I LOVE IT!! Sadly, due to COVID we wont be able to have it this year.

Ted’s top tips:


1.For a steaming up visor use demist anti-fogging spray

2.Neoprene dive gloves are great to stop your hands getting cold and wet during wet days out

3.For more tips please visit https://www.teddingtontrust.com/teds-info-hub.html


I can even eat ice-cream without my hat!


Eddison out!


Written by Eddison Miller


To find out more about xeroderma pigmentosum please visit www.teddingtontrust.com

To share your story with the #RAREYouthRevolution please email our Youth Editor Daisy Marriott

dmarriott@rarecommunication.com

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