Eddison brings you his second Eddison Explores column—where he talks about all the gadgets and gismos that help keep him safe from UV-rays, and help him manage his ultra-rare condition of xeroderma pigmentosum
What do you use to keep safe?
Do you rely on medical equipment to support your health?
My condition is xeroderma pigmentosum or XP which is easier to say, and to cut a long story short my skin always needs to be protected from ultraviolet light because I could suffer from skin damage and cancer if it is exposed.
But what is ultra-violet light I hear you ask, and what does being “protected” really mean?
Ultraviolet light is the light produced by the sun and is the same wavelength of light that many light-bulbs produce. But don’t be mistaken into thinking this only affects me on sunny days or when the lights are turned on. UV light is everywhere, all of the time, no matter what the weather forecast! From when the sun has risen to when the sun goes to bed, even if cloudy and rainy UV is lurking, and even inside UV can still reach me through window glass and the light bulbs.
So how do I keep safe and protect?
I could live in a deep dark cave, like the Gruffalo's child, with no light, all gloomy and black (but that doesn’t sound much fun), so I choose to just get on with my life and find another way to protect my skin.
Enter the gadgets and gismos, or as I like to call it my life saving bag of tricks. Here are the bits of equipment I use every day to keep safe:
UV protective hat (various styles to suit my activities)
Protective neck buff and gloves (plus all my clothes need to be 100% UV blocking)
Sun cream (LOTS AND LOTS of suncream, because I apply it every 3 hours)
Lightmeter (a handy gadget that helps me monitor the UV reading wherever I go)
UV umbrella (to help block the sun's intensity to reduce the heat on me on hot days)
Water bottle (with straw lid to drink under my hat when out to stop me dehydrating)
Spare clothes (in case anything gets ripped when climbing trees)
Spare batteries (for my cooling hat so I don’t run out of air and overheat when out and about. We learnt the hard way with this that the battery life is short!)
Cooling gel packs and spray to help me keep cool outside in my protection and stop me overheating, and
Emergency hospital contact and details of my condition in case I am in an accident so they know how to protect me
Any all of this goes in one big bag that goes EVERYWHERE with me!!!
Here are just some of my adapted protective hats. From left to right: My everyday hat, my cooling hat for hotter or longer days out, my cycle helmet and my swimming protection.
Here is a short video my mum made for Teddington Trust to help other families plan their own emergency bag!
Without all these different hats, and bits of equipment in my bag I wouldn't be able to go outside at all during the day and have all the AMAZING adventures I have!
Looking after all these bits is really important to me, as is how others do too. For example when I am school my TA looks after my bag, and in the classroom we keep it on a hook so I know where it is all times in case of an emergency and so it doesn’t get lost.
What also matters is what we call our important RARE devices and equipment. We all have our own preference about what we like out things to be called that make us feel comfortable and in control.
For me, its my hat. I like my UV protective visor to be called a hat because a hat is just a normal everyday thing. I really don’t like when people call it a visor, because to me that is something medical or something that a blacksmith or welder wears.
I especially hate when people call is a helmet or mask!
Masks are for Halloween or to cover up but I don’t want to be made to feel like I covered up, and I think it sounds like I am contagious – which I am not. I used to have an adult at school who used to say sometimes “time to mask up” and inside that made me feel sad and made me want to go home. I know they weren’t being unkind they just didn’t reaslise that to us kids these things really matter.
So my advice is, if you have a friend of family member, or a kid in your school with a rare disease please take the time to get to know how they like their important equipment to be looked after and what they feel happy with it being called.
And if you have a rare disease yourself, I would love to know what gadgets and gismos are important to you and what names you use for them.
Eddison out!
Wriiten by Eddison Miller
To find out more about xeroderma pigmentosum please visit www.teddingtontrust.com
For information about PANS please visit www.panspandasuk.org
To share your story with the #RAREYouthRevolution please email our Youth Editor Daisy Marriott
dmarriott@rarecommunication.com
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