A Journey of Resilience and Strength
Nathalie Richert was born with a rare skin condition known as ichthyosis with confetti (IWC), a disorder that affects only around 40 people globally. Despite the challenges she has faced, Nathalie embraces her condition and finds beauty in it. She shares, “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.”
At 25, Nathalie hails from Kivik in Sweden and describes her experience with IWC as one of constant struggle. Her skin is red, dry, and scaly, growing at seven times the normal rate, causing it to peel almost constantly. The ‘with confetti’ aspect of her diagnosis means her body is continuously trying to heal itself, resulting in patches of normal skin that appear in “blossom” patterns.
From an early age, Nathalie knew she was different. She was born looking slightly purple and did not receive a proper diagnosis until she was 13. Initially, doctors dismissed her condition as bacteria or thin skin. She recalls, “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 faced bullying, with children calling her a ‘tomato’, ‘monster’ or ‘disgusting’. Because of her mother’s work, the family moved frequently, and Nathalie attended schools in several different countries. In Spain, she encountered adults pointing at her, but she still found hope in humanity, thinking, “They may have just thought I was very sunburnt.”
One of the most difficult moments for Nathalie occurred before her diagnosis when she was just 11. She went on a school trip to a water park, but staff asked her to leave because other customers had complained about their children swimming in the same water as her. She remembers feeling sad, thinking, “Okay… why me? Why can’t I be here?” The idea that people didn’t want to be swimming in the same water as her was deeply hurtful.
Despite these challenges, Nathalie believes her childhood experiences have made her stronger. She credits her group of good friends for supporting her. “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.”
In addition to her skin symptoms, IWC causes fatigue, joint pain, and sometimes excruciating burning pain that forces Nathalie to spend entire days in a warm bath with Epsom salts to find relief. She also struggles with vitamin D absorption and must take supplements. Certain triggers, such as eating sugar, wheat, or dairy, and cold weather, can cause painful flares that make it hard for her to get out of bed. While there is no cure for IWC, treatments are available to manage individual symptoms.
On a typical day, Nathalie’s morning skincare routine takes around three hours, including a bath, shower, scrub, two full-body creams, eye drops, and various other steps. However, the former graphic designer refuses to let her condition hold her back. “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 experienced the kindness of humanity after sharing photos of herself on a modelling Facebook group in 2022. Several photographers reached out, and she even gave back to the IWC community. She shared, “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.”
Although there are moments when Nathalie feels insecure, seeing those pictures reminds her of her uniqueness. “When I see those pictures, I do feel different, but I feel like I look cool and unique.” Her journey reflects resilience, strength, and the power of embracing one’s differences.
