Woman bullied for rare condition making her one of ’40 reported cases worldwide’ says scaly skin is ‘cool and unique’

A young woman with an extremely rare scaly skin condition which makes her one of “40 reported cases worldwide” has said her differences help her see how “beautiful” the world is.

Nathalie Richert, 25, from Kivik in Sweden, said she was born with ichthyosis with confetti (IWC), an extremely rare form of ichthyosis, which is a group of rare skin conditions that cause dry, scaly skin.

She described her skin as red, dry and scaly and said it grows at seven times the normal rate, leading to near-constant peeling, but she also has patches of “normal” skin dotted across her body, creating “unique” patterns.

Previously, Nathalie said people referred to it as “fish scale” skin, but she stresses that those affected by the condition find this offensive and she avoids the term.

She said the condition causes fatigue, making her feel like an “old lady”, along with joint pain and often excruciating burning pain, which means she has to spend whole days in a warm bath with Epsom salts.

She said she has also faced discrimination and name-calling because of her appearance, with her peers calling her a “monster” and being told that she was not allowed to swim in a public pool when she was a child.

However, despite these challenges, Nathalie sees the positive in everything and wants to encourage everyone to “enjoy (their) life”.

“I get a lot of love as a result (of my condition),” she told PA Real Life.

“I’ve always been the small bird that my mum’s had to take care of, more so than my siblings.

“And many times people treat me really well because they feel sympathetic. Fine, it’s because of my condition, but who cares!”

Ichthyosis is a group of rare skin conditions that cause dry, scaly skin and, according to the National Institutes of Health (NIH), there are only 40 cases of IWC reported worldwide.

While it cannot usually be cured, Nathalie said her IWC is self-healing, meaning that her body is constantly creating patches of “normal”, healthy skin, which give her a unique appearance, similar to confetti.

“I’m not sure where the name came from, but I would say (the condition) looks more like blossom,” she said.

Nathalie was born with the condition and had a purple appearance at birth.

She said doctors did not know the cause at the time, believing it to be bacteria or just thin skin, and it was not until she was 13 that she was diagnosed with IWC.

“I always knew I was different,” Nathalie said.

“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.”

School was difficult at times for Nathalie, and she said other children were sometimes nasty to her.

One of her peers called her “tomato” because of her red appearance, while others said she looked “disgusting” or like a “monster”.

She said her family moved around a lot because her mother had a solar panel business and Nathalie found the warm weather less painful than the colder temperatures in Sweden.

As a result, Nathalie said she went to school in several different countries.

In Spain, she found “it wasn’t just children whispering”, but often adults would point at her in public, which made her feel very self-conscious and embarrassed.

“They may have just thought I was very sunburnt, though,” she said, looking for the positives.

Once, aged 11, Nathalie said she was on a school trip to a water park when she was approached by the staff and asked to leave.

She said she discovered that other customers had complained and did not want their children swimming in the same water.

“I felt really sad when they said that. I felt like OK… why me? Why can’t I be here?” she said.

“To think that people didn’t want to be swimming in the same water as me, that was very difficult.”

However, despite being subjected to bullying and name-calling, Nathalie said she has always had good friends and has always been able to enjoy life.

“I’m healthy apart from my condition, which I am very grateful for,” she said.

“Growing up has brought strength and I feel more powerful. I know my rights and I know how to take care of myself.”

In 2022, Nathalie posted some photos of herself on a modelling Facebook group, and she said several photographers contacted her.

“I put the images up on social media and people were commenting beautiful things,” she says.

“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.”

Nathalie’s condition does affect her day-to-day life significantly, however.

Sometimes she said her skin feels extremely painful, as if it is burning, and this is made worse by eating sugar, wheat or dairy, or the cold weather.

On those days, Nathalie will often spend the whole day in the bath.

“It is very difficult to get out of bed, and I need help to get into the bath,” she said.

“And in winter, I prefer to go to hot countries because the warmth is much easier on my skin.”

On “regular” days, Nathalie’s morning skin care routine takes roughly three hours and involves a bath, a shower, a scrub, two full body creams, eye drops and various other steps throughout the day, including vitamin D supplements because she said she is unable to absorb any otherwise.

Nathalie is constantly looking for the positives, however, and refuses to let her condition hold her back.

She worked as a graphic designer and has recently left to start a business selling matching products for animals and their owners with her mother, Janet.

“We only live once, so I try to appreciate everything I have,” she said.

“I am very happy with my life. Conditions will make your life harder, people will say things, but they do not matter.”

Speaking about her advice to others, she added: “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.”