Funny

Woman allergic to sunlight has to live like ‘real-life vampire’ or endure unbearable pain

Bex tried everything to help ease the effects of the rare allergy, even a form of skin therapy which led her into an anaphylactic shock in which she ‘almost died’

Bex Bergman, 31, and her partner
Bex Bergman, 31, and her partner

A woman’s rare skin condition turns her into a real-life vampire as she is forced to cover herself “head to toe”.

Bex Bergman, 31, can be seen wearing a black-out cloak to manage her rare allergy that leaves her skin covered in painful hives when exposed to sunlight.

The condition, called solar urticaria, causes an itchy rash or hives to appear on her skin forcing her to either stay in her house during the day or cover up from head to toe in specially designed clothes.

The mum of five from Garland in Texas has had to make several sacrifices from going out and visiting new places with her children – even struggling to get her photography business off the ground.

The photographer has had to replace her whole wardrobe as well as adding black out windows to her car, but insurance won’t cover it as there is “little known about the allergy”.

The condition, called solar urticaria, causes an itchy rash or hives to appear
(

Image:

Mercury Press & Media Ltd.)

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She added: “I had to pay over £660 ($830) to have my windows tinted, and more than £790 ($1000) to replace my wardrobe with specially designed clothing that protects my skin from UPF 50+ rays and above.

“Most of my clothes are now by a brand called Coolibar who block out 98% of UV rays, specific pieces of clothing can cost anywhere between £24 ($30) and £72 ($90).

“Even though they’re not that expensive, even my anti histamines and the blockers aren’t covered.

“However, I am now on a new medication designed for asthmatics which is covered called XOLAIR.

“I take two shots a month which aids my immune system and lessens the effects of flare ups.”

Bex Bergman, 31, dressed as a vampire
(

Image:

Mercury Press & Media Ltd.)

Bex in the sun before being diagnosed with solar urticaria
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Image:

Mercury Press & Media Ltd.)

In September 2018, Bex said she started to notice hives on her skin when she wore “slightly revealing clothes” like tank tops or skirts.

But when it occurred more often, spreading across her arms, back and legs, she was forced to stop wearing short sleeved shirts as well as shorts, skirts and dresses.

She said: “The hives are always painful and itchy, and they take a while to subside.

“I visited several doctors for an opinion on what it could be, and as solar urticaria is so unheard of, I often got turned away and told to change my laundry detergent.”

It wasn’t until the end of 2019 that Bex was given her diagnosis, by a dermatologist who had only ever heard of her condition from textbooks.

Bex tried antihistamines and histamine blockers but eventually her condition worsened and she tried a skin hardening routine -is a form of therapy created to tackle the allergen and boost immunity.

Bex said the pain can be ‘unbearable’
(

Image:

Mercury Press & Media Ltd.)

But this caused her to go into an anaphylactic shock and “almost died” and from that point, the pain from exposed hives became “unbearable”.

She added: “I didn’t realise you could get hives appearing behind your ears and on your tongue, so I had to start wearing full face masks and gloves whenever I left the house.”

Bex is currently working to raise awareness of the condition so that people living with the disease might get better access to workplace and business accommodations, and health insurance coverage for necessary purchases like window tint and sun safe clothing.

The 31-year-old said: “There is not enough knowledge about the allergy within the medical world, and that really needs to change.

“It took almost a year for me to have a diagnosis, in which time, I could have ended up incredibly unwell or worse.

“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.

“Going out in full length black clothes, you often get horrible looks or people will walk in the other direction, it’s very isolating.”

She added: “I’ve still not come to terms with my allergy and still struggle with the idea that there’s a lot I can’t do anymore.

“I watched the True Blood series a few weeks ago, and during a scene where Alex Skarsgard drinks the blood of a fairies and takes a swim in a lake in the sun whilst crying as he knew he wouldn’t be able to do it again being a vampire.

“I related to it so much, because that’s something I’ll also never be able to do again.”

Bex is also actively seeking collaboration with clothing designers to provide a more inclusive wardrobe for those with solar urticaria and other photosensitive skin conditions, such as Lupus.

You can follow Bex and her journey with solar urticaria on her Instagram @bexbergman.

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