My skin is scaly and burns constantly — I have a very rare condition

April 14, 2023

She’s one in a million — literally.

Nathalie Richert is said to be only one of 20 people in the world with ichthyosis with confetti, a debilitating skin condition that leaves her skin so dry and scaly that she can “peel off” the dead flakes.

The disorder is caused by mutations in the gene encoding keratin 10, which is responsible for the structural framework of skin, hair and nails. The 23-year-old Swede is missing the final layer of her skin.

She said she’s experienced cracking skin, stiff joints, extreme fatigue and even her eyelids turning outward.

“My skin is very different from day to day,” Richert shared in a YouTube video for “Shera,” a digital platform dedicated to empowering women.

Young girl wearing oink dress with red skin. — Nathalie Richert has suffered from the debilitating condition for her entire life.

Young woman long brown hair with red skin. — Although she struggled as a child, she has learned to embrace her skin.

Woman red peeling skin holding Coke. — Now 23, Richert is sharing her story to inspire others.

“One day it can feel very good, very soft and I can feel very free in my body,” she continued. “The next day I can’t even get out of bed and I have to stay in the bath all day to soften up and scrub.”

Richert said her skin worsens if the weather’s bad or if she’s sick, adding that her condition limits her activities.

“I don’t go out swimming on the beach because, one, the sand gets stuck on my body, and I also don’t like to go bathing and show so much of my skin because it’s so different, and that is what I’m trying to change in my mindset,” she shared. “Of course, it can feel hard sometimes.”

Richert recalls being born “purple and shiny,” leaving doctors scratching their heads when her skin bled from wearing diapers.

Woman, red peeling skin in bikini outside. — “I don’t go out swimming on the beach because, one, the sand gets stuck on my body, and I also don’t like to go bathing,” she confided.

Woman blue floral dress with red skin condition sitting down. — Richert gained the confidence to talk about her condition publicly in 2021.

Three young woman at table — She said she’s glad her social media presence has helped people with the condition.

Not much is known about her diagnosis since it’s so rare.

In an attempt to see what triggers flare-ups, she said she’s made changes to her diet. She revealed she’s also started hypnosis therapy to see if her symptoms improve.

“I think it will be hard finding a cure for this,” Richert admitted. “I’m trying to see if I can do things on my own.”

Richert first gained the confidence to publicly embrace her skin in 2021, making the decision to document her experiences online.

With some of her videos attracting thousands of views, Richert was contacted by several photographers. She said she was overwhelmed by the feedback to the photos she posted online.

“There were so many people who wrote and commented, saying, ‘Wow, you are such an inspiration,’ and I saw that I was helping a lot of people,” she gushed.

Woman with burn like appearance on skin. — Acceptance and self-love has been a difficult journey, but Richert’s happier now.

Woman selfie brown hair. — She said her skin condition varies in severity day to day.

But Richert said there are also people who call her “rude and hateful” names online.

“I can get a few quite mean comments [on TikTok], so I like more to post on Instagram because I don’t need that bad energy in my life,” she reflected.

“The comments … that really make me happy is when a mother or a parent messages me and asks questions because they have a child with ichthyosis,” she enthused. “They say that I have helped them a lot and that they feel so glad when they see someone older with ichthyosis and still have a normal life, and friends and still being happy.”

Richert hopes that by sharing her condition she can encourage others to embrace traits they don’t like about themselves.

“It’s cool to be a bit different and special and unique,” she declared. “And it’s important to embrace it and be proud of that.

“I am going to love myself,” she vowed.