One of the most frequent questions we get asked from people who enquire when they meet Eddison is “so what would actually happen if he was exposed to UV”
I understand that because the consequences aren`t visible its difficult for people to grasp what it means and what the real risk is to children and adults like Eddison with XP, but living with XP means living with the constant anxiety of maintaining a defense against daylight and artificial sources of Ultra-violet light at all times.
It means on a daily basis having to make judgments on the safety of activities, travel, etc but also on the minutia of basic living, which means making a judgement on every item of clothing worn when outside of their safe space.
Is this t-shirt with his jumper ok?
What if he gets hot and wants to take that jumper off?
Are these socks ok with these shoes and this length of trouser?
What if he takes his shoes off, are the socks ok?
If these gloves get wet is the UV protection still in-tact?;
and so it goes on…
Then there is the issue of deterioration, an item of clothing that was once perfect, may after washing, or with wear lose some of its integrity and at what point does that occur?
So you see it isn’t as simple as it seems, “cover every millimetre of skin” (not that this is simple by any standard either). Unbelievable to most; patients like Eddison can and do actually burn through clothes! We found this out first hand before Eddison was diagnosed when he repeatedly burned through his cotton long sleeved tops.
This has more recently been brought home to us again when an online friend, James; from the XP community posted photos of recent burns he sustained whilst wearing lined woollen slippers!
1) Initial Burn; 2) 10 Days Later… 3) Two Weeks Later
These pictures are the horrific burns he acquired through these slippers, and you will note that with no skin repair mechanism after 2 full weeks from the incident James is still suffering from terrible, angry burns.
James and his family have dealt with his condition for over 20 years which shows how relentless the daily challenge is to keep safe and protected.
Thank you so much to Cathy and James Coleman for allowing us to share these images with our followers, and for their advice and inspiration x x