Meet the Birmingham artist living with “man on fire” syndrome

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Frame of Charlotte explaining EM on Instagram.

A Birmingham artist is on a mission – to teach people about her invisible illness.

Charlotte lives with erythromelalgia (EM), also known as “man on fire” syndrome, which makes parts of her body swell up with an intense burning pain.

“My hands feel like there are burning hot coals being pressed into them,” Charlotte says.

“Even when the pain goes down, my fingers are still incredibly stiff. I have multiple flareups daily, and it makes it very difficult to stand and walk, or do anything with my hands.”

A piece of art, showing EM flareup points on the body
A piece of art, showing various pain points on the body. Credit – Charlotte Robinson

Charlotte’s first flareups started about ten years ago. When she first visited a doctor about it, they didn’t know what was wrong. Eventually, she found the name for her condition – erythromelalgia.

“I was really worried about this strange thing happening in my hands during a school exam, and not being able to write.”

“A flareup in my hands makes my fingers swell up and burn, and I find it hard to grip anything.”

“It makes it hard to be an artist and a writer!”

Watch a day in Charlotte’s life below –

Footage credit – Charlotte Robinson

What is erythromelalgia?

EM can be a genetic condition, or have no identifiable cause. It can also be a symptom of other health issues with the blood, nerves, or immune system.

Very few studies have been done on EM. Anywhere between 1.3 to 15 in every 100,000 people have it, with women almost 4 times more likely to have the condition than men.

The symptoms of EM are usually caused by a change of body temperature, but can also be caused by stress, drinking alcohol, eating spicy food, or dehydration.

Flareups can last anywhere between a few minutes, to a few days.

Medicines can help to relieve the symptoms of EM.

What is being done?

Charlotte has starting making face masks with a friend to raise money for EM research.

US-based The Erythromelalgia Association helps to fund research into EM, and promote awareness for the EM community.

There is no cure, but charities like Pain Concern can help with awareness and support for those living with chronic pain conditions.

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About Author

A journalist for Birmingham Eastside. Multiplatform and Mobile Journalism MA.

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