'My scaly skin is constantly peeling and growing, I've been called a monster but I feel unique'

Nathalie Richert was born with ichthyosis with confetti (IWC), a rare skin condition that has just 40 reported cases across the world. She has faced discrimination, name-calling and was even asked to leave a waterpark as a child, but she embraces the condition, telling PA: “I get a lot of love as a result.

“Many times people treat me really well because they feel sympathetic. Fine, it’s because of my condition, but who cares! People who have everything get bullied and someone will always be mean. But don’t care about them, enjoy your life. The world can be beautiful.”

The 25-year-old from Kivik in Sweden explained that her red, dry and scaly skin grows at seven times the normal rate, making it peel almost constantly. The ‘with confetti’ part of her diagnosis means that her body is constantly trying to heal itself, leaving her with patches of normal skin dotted across in “blossom” patterns.

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She was born with the condition, looking slightly purple at birth, but did not get a proper diagnosis until she was 13. Doctors often dismissed her condition as bacteria or thin skin. She recalled: “I always knew I was different.

“When I was a kid, I could never do things other kids were doing, like sleepovers, because I’d have to do my skincare routine, and I was always in a lot of pain and very stiff.”

During her school years, Nathalie was the victim of bullying with other children branding her a ‘tomato’, ‘monster’ or ‘disgusting’. Because of the nature of her mother’s work, the family moved often and Nathalie went to school in several different countries.

In Spain, she found it was also the adults pointing at her, but she still has hope in humanity, looking to the brighter side: “They may have just thought I was very sunburnt.”

One of her biggest trials happened before her diagnosis when she was just 11-years-old. Nathalie went on a school trip to a water park but staff asked her to leave as other customers had complained that they did not want their children swimming in the same water as her.

She said: “I felt really sad when they said that. I felt like ‘okay… why me? Why can’t I be here?’ To think that people didn’t want to be swimming in the same water as me, that was very difficult.”

Nathalie believes her challenging childhood has only made her more powerful, crediting her group of good friends too: “I’m healthy apart from my condition, which I am very grateful for. Growing up has brought strength and I feel more powerful. I know my rights and I know how to take care of myself.”

Alongside the skin symptoms, ICW also causes fatigue, joint pain and sometimes excruciating burning pain that leaves Nathalie spending entire days in a warm bath with Epsom salts trying to soothe it. She’s also unable to absorb vitamin D and has to be on supplements.

Eating sugar, wheat or dairy, and cold weather can trigger painful flares that make it hard for Nathalie just to get out of bed. The condition cannot be cured, but there are treatments to help manage individual symptoms.

On a normal day, Nathalie’s morning skin care routine takes around three hours including a bath, shower, scrub, two full body creams, eye drops and various other steps. But the former graphic designer refuses to let it hold her back.

She said: “We only live once, so I try to appreciate everything I have. I am very happy with my life. Conditions will make your life harder, people will say things, but they do not matter.”

Nathalie really got to see the good side of humanity after sharing some photos of herself on a modelling Facebook group in 2022. Several photographers reached out and she even ended up giving back to the ICW community.

She said: “Someone whose daughter has the same condition got in touch, and that makes me very happy because I know how hard it was for my mother. I could reassure that lady that her daughter would grow up to be functional and healthy too, which was amazing.

“There are many moments when I have bad thoughts and feel insecure but, when I see those pictures, I do feel different, but I feel like I look cool and unique.”