Sharing My EB Story: A Conversation with Stevie Hislop, Part I

Recently, we had a chance to chat with Stevie Hislop, a young woman who is using the social media tools of blogging and YouTube to share her passion for beauty products as well as connect with others to inspire and educate them about life with EB.

In part one of our two-part conversation, the 22-year-old from Australia is open and candid as she talks about growing up with EB and how she’s learned to cope with the challenges that can accompany it.  


EB Resource (EBR): Where is home for you?

Stevie Hislop (Stevie): I've lived in the same place for 22 years now. It’s a rather small country town situated in NSW Australia, Moree. It’s been my hometown where I've grown up and made a lot of friends.


EBR: Are you an only child or do you have any siblings?

Stevie: Luckily, I have a half-sister and she does not have EB. Her skin is absolutely beautiful!


EBR: At what age growing up did you fully realize that you had day-to-day challenges to deal with that other kids didn’t?

Stevie: I think from an early age I knew I was different. When I look back now at my first day of school, it really hit me that I was different compared to the other children that were running around on the playground! I used to just sit out in front of my classroom watching them have fun. I think it was my first week at school that I remember standing in a line waiting to show my teacher the work I had completed that day, and there were these two other children being silly pushing each other and one of them pushed me and I fell backwards onto my bottom. All I remember was screaming, because I knew if I fell over I would have a lot of circumstances to face with skin ripped off my backside. I sat there screaming in a mess! I pretty much knew I was different from the other kids from that day on.


EBR: How old were you when your family was told that you had EB?

Stevie: I was born with EB. Like most babies born with it, the first few hours of birth start to show the effects, like skin being rubbed off the hands and feet. When I was born, the doctors told my parents I had a tooth in my gum but a little later they took a much closer look and found out that it was a blister. That's when the doctors started thinking more about the blister and by early morning, I had also rubbed all of the skin off of my feet!


EBR: Tell me about the first time you met another person with EB.

Stevie: I don't totally remember the first time I met another person with EB although my mum and dad did take me for a visit to this family’s house where the little girl had the same type of EB as me, but I was only a baby so I don't remember this. I first met my friend Nikki when I was in my young teens. She lives 9 hours away from me and ever since making contact with her we've become close friends!


EBR: Did you have any thoughts growing up about what life would be like as an adult with epidermolysis bullosa?

Stevie: When I was a child, reality for me growing up and living with EB was very scary. I would never EVER have thought I would be where I am today, not in a million years! I thought my whole life would be one big world of pain and suffering. Thankfully though, I was completely wrong!


EBR: What have been the most challenging aspects of living with EB?

Stevie: Definitely having to go through dressing changes every two days. The pain is one of the hardest aspects of living with EB, going through it both physically and emotionally. Then the daily routine of getting dressed when my wounds are at their worst and it’s a struggle to put on a T-shirt. Forcing myself to eat when I have blisters in my throat and mouth…simple things that may seem easy to a normal person are the hardest for a person living with EB.


EBR: Have you ever taken part in a clinical trial?

Stevie: Actually, I have taken part in a few clinical trials. Some were good, and some weren't so great! The trials weren't life changing nor were they pain-free, which is always a downfall to these types of things but the doctors try their best at keeping the pain levels down. My first clinical trial was one of the most painful injections I've ever had. I would scream in pain, but this trial did heal some bad wounds. The second trial was much less painful. I absolutely think trials are worth a go although its never nice feeling like a pin cushion.


EBR: What strategies helped you cope with EB while growing up?

Stevie: There is always someone worse off than me. We are all dealt different cards, some more worse than others, I've been brought up not to feel sorry for myself, even when I’m having a bad day. I always have to move forward onto better things and make the most out of each “good” day as they come!


Next week, we’ll discuss with Stevie her decision to journey into the social media universe and find out how it has changed her life.


  1. the moderator says:

    Thank you for your comments!

  2. Michele says:

    I have watched stevie grow up from the day she was born and I could not tell you how proud and amazed we should be of her, she is a remarkable young lady.  She knows how to live life to the full, also enjoy the odd champange or two.  I know how her dad has been by her side and helped her be the person she is today. Stevie is so good at doing makeup,  I watch her website to see what she is doing.   She could also teach us all to be greatful for what we have and not what we wish for.  xx