Once super shy because of a rare genetic condition, Eileen Uthuppan is now having her main character moment and using her voice to #represent young people like her. She’s teamed up with big brands like Cetaphil and Neutrogena, and even launched her own magazine to spread awareness and confidence worldwide.
Eileen, 23, is one of a small population suffering with a sub-type of ichthyosis, a severe skin condition. Lamellar Ichthyosis is only seen in every 1 in 200,000 new-borns, according to the British Skin Foundation.
Eileen says sharing her story with others through her ‘SkinRare’ magazine helped her find a purpose.
“I’m just happy to help people who feel like they’re not being seen. When I started that page, as long as I made a difference to one person, that was all that mattered.” she said, “But I think it’s been multiplied by a hundred. So it made me feel like I really did find my purpose.”
Eileen graduated from Valparaiso University in 2023 and is currently in graduate school, hoping to become a dermatological physician’s assistant.
For her, ichthyosis means spending more time than average on skin maintenance.
“My skin is very much in a cycle. Once I notice my skin getting super dry, that’s when I shower and really exfoliate everything. it takes more time, for normal people they’re in and out, but for me I feel like I’m in the shower for an hour just scrubbing. it’s just so much dead skin that’s just accumulated. Especially on my legs, it takes so much longer.” she said.
We spoke to resident dermatologist and author of ‘Skin-vincible’, a book on ichthyosis, Dr Andrea Rustad, on how the condition presents on the skin.
“Ichthyosis is a group of chronic genetic skin conditions where essentially, people have increased cell turnover and scaling, and this leads to dryness of the skin, often with cracking, and very thick tight skin which can be uncomfortable and painful.” she said.
“There’s a lot of different types of ichthyosis, even different people with the same name type of ichthyosis can have different features.”
Although Eileen is absolutely slaying the game in sharing her skin nowadays, she says her mental health was affected by ichthyosis much more in her younger years.
“I was just very shy about it, my skin made me in a way where I’m more reserved and quiet. I don’t know if my skin type kind of affected how my personality is, just because I wanted to avoid eye contact with people and just them looking at me.
“So growing up in school I hardly talked. When I was younger, I would definitely say mentally I was just very down. Because I’m Catholic as well, I used to always question God: “why did I have this? Why did you give me this? This is so rare.'”
I used to always question God “Why did I have this? Why did you give me this? This is so rare.
Dr Rustad explains how this mental exhaustion can be a hard battle for those with ichthyosis.
“One of the most important points to highlight is how much it impacts people’s psychosocial health,” she said. “All this extra time that it takes to take care of one’s skin, as well as constantly having to explain yourself to other people for why your skin is different. There’s a lot of misunderstandings and stigma and mistreatment that goes along with it, for all ages. This really takes quite a toll.”
However, one thing that has helped Eileen massively, is helping other young people with awareness, despite the initial reactions they might have to visible differences.
This can take the form of books, such as ‘Skin-vincible’, which Dr Rustad and Eileen worked on together to make sure representation of ichthyosis was as real as possible.
“Having stuff for kids is important to help understanding, because with them if they see something that’s totally different, they’re going to have a reaction.” Eileen said. ” I had a relative who was younger than me, she didn’t really know what it was. She just right away said “Oh my gosh, that makes me want to throw up.” She’s a young girl and I can’t get mad at her, but I just didn’t know what to say to that.”
Read more personal stories: Flare ups? Flaky skin? We don’t mind – #GetYourSkinOut
In tenth grade, Eileen joined the FIRST skin foundation as a moderator, and was shocked by the lack of young people on the calls between people with ichthyosis. This is what sparked her passion for awareness.
She has since attended conferences to raise awareness of the condition and runs workshops for young people to talk about it together in a safe space.
“There was no one my age on there and that struck me. I thought “Wait, we need more kids to just be open up and talk.” The adults even told me they wish they had the confidence I did at my age.”, she said. “Part of me didn’t even feel that confident when I was talking with them, but they perceived it as that.”
Dr Rustad explains the skin barrier more in detail through this ‘brick wall’ analogy.
Dr Rustad also emphasises that the names for different ichthyosis types are currently going through a reclassification process after becoming more well-known publicly, to avoid stigmatising names, solely based on how they look on the skin.
Eileen’s partnership with Cetaphil on TikTok has helped to raise further awareness through sharing her skin online.
“Me being so vulnerable started a chain effect where other people were willing to also start posting themselves. At the end of it, me talking about my skin type actually changed my whole perception of myself. if I didn’t talk so openly about it, I would think I would be even more scared of my skin.”
Representation outside of communities is also a key factor for awareness, says Eileen.
“I’m just glad that there was something out there with such a big company like Cetaphil, to me it’s so cool making baby steps out there with our skin types. I hope we get more people and more like brands and things like that that can include us as well.”
Her message for people struggling with any skin condition, from acne to psoriasis, is simple.
“Remember that skin confidence it’s going to always be a journey. Even for me today, I still have my ups and downs and that’s completely normal. Never feel like you’re going to always be 100% there.
“You have people that support you and I know it’s scary to talk about it, but it helps so much and you’re going to get things that you never thought you would. You should appreciate your milestones and step steps and see how much you’ve grown.”
For more information on ichthyosis, check out the UK Skin Foundation and the Ichthyosis Support Group.
