Just 10 Scots are affected by xeroderma pigmentosa, an ultra-rare condition that can leave them severely sunburned after just a few minutes outside.
There are a little more than 100 people throughout the UK with the illness, and many receive support from an Alford charity now marking its 10th anniversary.
What is xeroderma pigmentosa?
XP is an inherited condition affecting the DNA that leaves people incredibly vulnerable to harm from UV light.
Even a brief period in the sun can leave them with dry skin and changes in pigmentation.
As a result, patients are around 10,000 times more susceptible to skin cancer than the general population.
Additionally, around one-third have problems with their hearing, sight or nervous system.
Unfortunately, there’s no cure.
Sufferers need to rely on covering up with hats, visors and gloves – and even putting special film on their windows to block the harmful rays.
Alford charity set up to help 13-month-old with XP
Sisters Rebecca Stewart and Nicola Miller set up the xeroderma pigmentosum support charity Teddington Trust following the diagnosis of Nicola’s 13-month-old son Eddison.
After struggling to find age-appropriate support, they dreamt up character Little Ted and created two books of short stories to help youngsters learn about the condition.
They also made it their mission to give every youngster with XP a cuddly bear, who comes with his own protective clothing and a paw that’s reactive to UV light.
The charity has now rebranded to Action for XP and chairman Richard Barlow, a dermatology doctor who has the condition himself, says it’s crucial they help spread the word.
“It’s a genetic disorder, I was born with it and I am now 32,” he said.
“But I’m still learning and every person I meet with XP teaches me something new.
“It’s just under a one-in-a-million condition, spread throughout the UK, and all of those patients and their families do things slightly differently.
“Everyone manages slightly differently, so there’s something to learn from everyone.”
What support do people with XP need?
Action for XP supports, educates and connects people and their families with XP.
This includes providing photo-protective equipment and social support, among other projects.
Richard added: “It can be very isolating – particularly off the back of Covid.
“The mainstay of skin protection is with sunscreen, gloves, long sleeves, and head and neck protection with what looks like a Covid shield with a hat on the back.
“It’s quite a striking-looking thing.
“At the beginning of the pandemic, everyone thought we were just very careful against catching Covid.
“But things quickly returned to what we’re used to – lots of staring and ignorant comments, and they’re just the tip of the iceberg.
“And if I’m walking through a hospital wearing one – somewhere you’d expect people to be taking precautions – they still stare.
“It’s isolating and it can be quite lonely.”
For more information on xeroderma pigmentosum and the Action for XP charity, visit actionforxp.org
Conversation