Dead, Flawless: My Journey with Harlequin Ichthyosis

I'm not sure what people expect when they see my skin for the first time. Maybe they think it's grotesque or unsettling, but I've learned to live with it. Growing up with Harlequin ichthyosis (HI), a rare genetic disorder that causes severe skin abnormalities, wasn't easy, but my mom was always there to help me navigate the challenges.

As a child, people would often stare at me or whisper to their friends when they saw my red skin. Sometimes, they'd ask if I'd been sunburned or if I was in a fire. My mom and I would work through these situations together, and we've always been pretty good buddies because of it.

One of the hardest parts of having HI is that my skin sheds even inside my ears and nose, which makes it hard to hear and can be very itchy. My mom used tweezers to remove the excess skin, and she did everything she could to teach me how to take care of myself. To avoid skin infections, we'd wrap me in gauze and apply Aquaphor lotion all over my body multiple times a day.

Despite the challenges, I was extremely blessed. Many HI-affected babies have to use feeding tubes at night to ensure they're gaining enough weight, but I didn't need one. And because my skin sheds and grows so much faster than average, I actually lose a lot of calories each day – it may not sound like it to most people, but it's true.

When I was born 23 years ago, the doctors told my mom that I'd only survive for 30 minutes to an hour. But I've been defying expectations for a long time now. In fact, at 20, I became the first woman with HI to give birth – something that was considered extremely dangerous due to the risks of infection and complications.

Despite the fears of my doctors, I knew it would be okay. Pregnancy meant huge risks for me, but they were worth it to me. However, pregnancy also makes it super easy for me to get an infection since it suppresses my already-low immune system. Additionally, pregnancy hormones make it harder for me to regulate my body temperature, and my thick skin doesn't stretch at all – which often breaks into painful cracks.

But I've always wanted to be a mom, and becoming one was the most important thing to me. So, even though the risks were high, I knew that it would all be worth it in the end. And now, as a mother myself, I can say that it was all okay – because my child is here with me, and I'm grateful for every moment we have together.

This article is about my journey living with Harlequin ichthyosis (HI), a rare genetic disorder that causes severe skin abnormalities. Despite the challenges, I've learned to live with it and even defied expectations by giving birth at 20. Here's my story.

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