Ted's information and resource hub
We have assembled some of our favourite and most useful links for information and guidance, which will be updated and refreshed as appropriate with current information.
Clothing & accessories
Clothing and UV protection: Where possible source clothing which carries the UV Standard 801 badge. This is deemed to be the highest standard when rigorously tested.
Buying Standard 801 clothing online:
Visor hats: hats for adults and children are available via Hyphen. Please contact us for guidance on sourcing these and the visor film which is dispatched from Teddington Trust.
Alternatively, the following is a great video on how to make your own using your own hat and UV fabric. XP Family Support Group Video
To combat fogging up of misting in cooler climates there are a range of solutions from home products such as washing up liquid to high performance liquids such as Salclear D-Mist +
Accessories/buffs: There are a great range of UV buffs which can be useful.
Accessories/Gloves: UV protective gloves are available in child and adult sizes via Hyphen (see link above).
Cooling: Here are some useful links for clothing to help with core cooling and comfort.
If finding a safe area for shoe fitting proves difficult you can purchase your own size gauge directly from Clarks (ideal for children) which means you can measure safely at home and order on line.
Using a public toilet isn't always possible and outside unsafe: There are a range of urine bottles available for adults and children which are just a really handy thing to have in the car or your bag:
Uriwell (unisex bottle): www.completecareshop.co.uk
or for children Uriwell Hapy Pee
Perhaps also carry a UV-block poncho to cover up in time of toileting in unsafe areas. We have found that heavy weight, dark colours offer enough protection.
In the car: There are a couple of things that can be very useful to keep in the car or when traveling. See below:
Medical letter with your essential information and Consultant details. Request one from your lead Consultant.
Medic alert: As well as carrying one on you, it is also a great idea to have a seat belt one in the event of an accident. There are a wide range of medic alert devices and aids from the ID Band Company and seat belt alerts are available from www.topoftheline.com
Travel blinds: these are hand for stop over accommodation, making a make-shift safe change area in the car boot and many more uses. Gro Anywhere Blind
In car sign: To avoid confusion if a passing car or pedestrian try to open your door or window consider having a laminated sign in the car door to flash to briefly explain the situation. Some suggested wording is:
"A PASSENGER IN THIS CAR CANNOT
BE EXPOSED TO DAYLIGHT.
PLEASE BE PATIENT WHILE HIS PROTECTIVE CLOTHING
IS APPLIED BEFORE WE OPEN THE VEHICLE"
Fun stuff and kids
Here are a few ideas and useful links to bring extra fun to night play and some safe daytime fun too.
In the day
UV reactive bands can be a useful way to explain the invisible presence of UV in the environment around them. There are many products out there, and the following link have a lovely range to suit any age.
Night time adventures:
The Natural History Museum, London: Late night viewing and Dino Snores (childrens camp out)
Day time adventures: to follow...
Protecting your home: UV transmits through glass and as such it is advised that patients where practically possible install a UV blocking film to windows at their home and work environments. It is generally accepted that the leading recommended film is DERMAGARD, manufactured by Bonwyke.
For details of an approved installer in your area email firstname.lastname@example.org
It is also advised to protect your car with a similar film which can be fitted by car window tint specialists in your area.
Out and about
Light meter: With the use of a light meter which measures UV you can assess environments outside of the home for safety. For many families and patients this is an invaluable tool, allowing them to assess the safety of any given situation.
Various meters are available, however this is our preferred one. www.lutron.com
There is another meter widely available that is also recognised as meeting the need of XP Patients, available from www.merlinlazer.com.
NOTE: With the PUV we work to an absolute figure of ZERO, howvever all meters are weighted slighty differently. We advise that you test what your meter reads when against Dermagard, and use this as your ZERO.
Lots of really useful information to follow
Sun cream selection
Lots of really useful information to follow
It is absolutely imperative that XP Patients and their families are diligent in taking Vitamin D supplements, as the primary source of Vit D is through the suns rays. Vitamin D is vital for development of strong bones and long term health.
In the UK, you can get these prescribed via your GP, or you can purchase online. There are many forms that Vitamin D can be taken but a simple oral spray offers easy, fast dosage for all the family. D Lux Sprays are available in a range of dosage to suit children and adults. Please consult you GP or Consultant for the dosage right for you.
Useful reading on the importance of Vitamin D from the NHS.
Schooling, Education & Young People
The following are just some useful links to help direct you through the minefield of some of the processes you may find yourself in during the quest for safe education:
More to follow