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Women allergic to sunlight have to live like a “real vampire” or endure excruciating pain

Bex tried everything to ease the effects of the rare allergy, even some form of skin therapy that sent her into anaphylactic shock from 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 true vampire as she is forced to cover herself “from head to toe.”

Bex Bergman, 31, wears a blackout coat to manage her rare allergy that covers her skin with painful hives when she’s out in the sun.

The condition, called solar urticaria, causes an itchy rash or hives on their skin, forcing them to either stay indoors during the day or cover themselves from head to toe in specially designed clothing.

The mother-of-five from Garland, Texas, has had to make several sacrifices for taking her kids out and visiting new places — she even struggled to get her photography business off the ground.

The photographer had to replace her entire wardrobe and fit black-out windows in her car, but insurance will not cover the cost as “little is known about the allergy”.







The condition, called solar urticaria, causes an itchy rash or hives
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Picture:

Mercury Press & Media Ltd.)

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

“Most of my clothes are now from a brand called Coolibar which blocks 98% of UV rays, certain clothes can range from £24 ($30) to £72 ($90).

“Although they’re not that expensive, even my antihistamines and blockers aren’t covered.

“However, I am now taking a new drug called XOLAIR that has been developed and covered for asthmatics.

“I take two shots a month, which supports my immune system and reduces the effects of flare-ups.”







Bex Bergman, 31, dressed as a vampire
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Picture:

Mercury Press & Media Ltd.)







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

Mercury Press & Media Ltd.)

In September 2018, Bex said she began noticing hives on her skin when wearing “slightly revealing clothing” like tank tops or skirts.

But as it became more frequent and spread down the arms, back, and legs, she had to stop wearing short-sleeved shirts, as well as shorts, skirts, and dresses.

She said: “The hives are always painful and itchy and it takes a while to go away.

“I’ve seen several doctors to get an opinion on what it could be, and since solar urticaria is so unheard of, I’ve often been turned away and told to change my detergent.”

It wasn’t until late 2019 that Bex received her diagnosis from a dermatologist who had previously only heard about her condition from textbooks.

Bex tried antihistamines and histamine blockers, but eventually her condition worsened and she tried a skin-hardening routine — a form of therapy designed to fight the allergen and boost immunity.







Bex said the pain could be “excruciating”.
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Picture:

Mercury Press & Media Ltd.)

But this led to her going into anaphylactic shock and “nearly dying,” and from that point on, the pain from exposed hives became “excruciating.”

She added, “I didn’t know hives could appear behind the ears and on the tongue, so I had to start wearing full-face masks and gloves when I left the house.”

Bex is currently working to raise awareness of the disease so people living with the disease have better access to work and business housing, as well as health insurance coverage for essential purchases like window tint and sun-proof clothing.

The 31-year-old said: “There is a lack of knowledge about allergies in the medical world and that really needs to change.

“It took me almost a year to have a diagnosis and in that time I could have been incredibly poor or worse.

“The public also needs to have a little bit more understanding and awareness of allergies and disabilities that require people to cover themselves from head to toe.

“Often when you go out in full black clothes you get horrible looks or people walk the other way, it’s very isolating.”

She added: “I still haven’t come to terms with my allergy and I 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 a fairy’s blood and swims in a lake in the sun while crying because he knew he wasn’t there yet once do might be a vampire.

“I related to it so much because I can’t ever do that again either.”

Bex also actively seeks collaborations with clothing designers to offer a more inclusive wardrobe for people with solar urticaria and other photosensitive skin conditions like lupus.

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

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https://www.mirror.co.uk/news/weird-news/woman-allergic-sunlight-live-like-26866735 Women allergic to sunlight have to live like a "real vampire" or endure excruciating pain

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