She roams the world at night like a vampire, fearful of the daylight. Whenever the sun comes out, Bex Bergman has to run for cover – otherwise she breaks out in painful, itchy hives.
Bex suffers from solar urticaria, a rare form of chronic inducible urticaria. The condition causes the skin to swell and start to itch within minutes of exposure to natural sunlight or an artificial light source that emits ultraviolet radiation.
The 31-year-old mom from the US first noticed hives on her skin when she wore clothes like tank tops or skirts in September 2018. The more skin was revealed, the worse her hives became.
To cope, the mom of two avoided leaving the house during sunlight hours, and this affected her ability to work as a photographer.
At first, doctors didn't believe UV rays were causing her skin to break out and she was simply told to change her washing powder. It wasn't until the end of 2019 that she was diagnosed by a dermatologist who had only ever heard of her condition from textbooks.
Now she spends most of her days indoors, covered up and with the curtains closed.
“The hives are always painful and itchy, and they take a while to subside,” she explains. “I didn't realise you could get hives behind your ears and on your tongue, so I had to start wearing full face masks and gloves whenever I left the house."
Bex has spent a fortune adapting to her condition. “I had to pay over £660 (R13 000) to have my windows tinted, and more than £790 (R15 000) to replace my wardrobe with specially designed clothing that protects my skin from UPF 50+ rays and above," she says.
“Most of my clothes are now by a brand called Coolibar, which blocks out 98% of UV rays," she adds. "Specific pieces of clothing can cost anywhere between £24 (R487) and £72 (R1 400)."
Doctors have tried several treatments for her condition, she says. One treatment included deliberately being exposed to sunlight. "The option for skin hardening is a lengthy and painful process where I would be subjected to my allergen until (in theory) I might become less reactive,” she says.
Bex stopped the treatment as she nearly died after going into anaphylactic shock.
She now uses a combination of antihistamines to treat her condition.
“I'm now on a new medication designed for asthmatics. I take two shots a month which aids my immune system and lessens the effects of flare-ups.”
Since her diagnosis, Bex has been on a mission to raise awareness about solar urticaria and other photosensitive disorders.
She’s also looking for designers and brands that are willing to work with her to create a more inclusive line of clothing for people with photosensitive disorders.
“The public also need to be a bit more understanding and aware of allergies and disabilities which require people to cover up head to toe," she says.
“Going out in full-length black clothes, you often get horrible looks or people will walk in the other direction. It's very isolating.”