Liz's story

Epidermolysis bullosa

Patient Voice spoke with Liz Trinnear, a Canadian TV correspondent living with a rare skin condition called epidermolysis bullosa, about self-confidence in the public eye.

London, ON

I ventured into a career in TV when I was just 21 years old. I won the MuchMusic VJ Search, which was my dream. Now I’m etalk’s LA correspondent. It’s been an incredible adventure and a wild ride.

Because of my work, I’m used to being in the public eye. At the beginning of my career, I very much wanted to fly under the radar and to pass as normal. And this was a challenge, because I have a rare skin condition called epidermolysis bullosa (EB).

Children born with EB are often called ‘butterfly children’ because our skin is as fragile as a butterfly’s wing. We all have layers of skin and in between each layer, there’s sticky glue that binds it together. Those of us with EB don’t have that sticky glue, so our skin is very fragile and tears easily, even from things like a band-aid or a harsh seam on clothing. In order to heal, we blister. It’s quite itchy and painful, and a simple knee scrape can cause weeks of injury, infection, or even a trip to the hospital.

When I started in TV, I covered up my blisters with long sleeves and makeup. I had an amazing makeup artist who would help me cover my scars. But eventually I realized that this is a part of me, and I stopped hiding.

Now, I’m free to be myself. I adapt things so that I’m comfortable. For example, wearing high heels is brutal for everyone. Add a skin condition where blistering is the number one symptom to the mix and suddenly wearing high heels for hours on end is just unbearable – and dangerous. Because of this, I’m known for having an obsession with sneakers – even on red carpets. At the Golden Globes one year I was in this gorgeous gown from a Canadian label, RVNG, and I was in an elevator with actress Rachel Weisz. She caught sight of my sneakers underneath my beautiful gown and she was like, ‘Oh my god, you’re so genius!’ It’s a talking point and I’ve learned to embrace it.

I’ve found that most people are full of compassion and understanding. And sharing my experience has been so great for my life and my self-confidence.”