EB Connect Spotlight: Martine Svaeren

Our one-of-a-kind EB Connect community is made up of individuals and families from around the world who are navigating life with EB. The EB Connect Spotlight series highlights these individuals and their unique stories.  

Today’s spotlight shines on Martine Svaeren, a peer leader for DEBRA Norway who lives with EB Simplex. 

1. When were you diagnosed with EB Simplex? Please tell us about you and your family's journey learning about the diagnosis.

I was diagnosed with EB simplex right after I was born. I’m the youngest of three siblings, and I’m the only one in the family with EB. My mom and dad had to learn how to carry me properly and how to care for my skin and how to wrap me in bandages the first few months of my life. We have nurses who came home to us every Sunday to help with the biggest care. The rest of the care, my mom or I (now that I’m older) do alone. I’ve been lucky to have parents who have treated me just like a normal child, and they have let me try out new things even though they knew the consequences of it. I’ve been through a lot of bullying in my life because of EB, but now that I’m older I have found amazing friends and I’m not getting bullied anymore.

2. What are some challenges, if any, that you have faced as an individual with EB? How did you learn to overcome them?

Some of the biggest challenges about living with EB is trying to accept the disease. But when I finally did accept it, it got a lot easier to live with.

3. Please tell us about your awareness efforts on social media. What inspires you to share your story?

I started my Instagram account @lifewithebsimplex in December 2021. It was one of my friends who encouraged me to start it because she thought my story was special and needed to be shared. Now I get inspiration to post from the people who are following me and like my posts and tell me that I’m helping them in some way. That really warms my heart.

4. Please tell us about the volunteer work that you do with DEBRA Norway. What activities are you involved with?

I’m a peer in Debra Norway, and I work most with the younger generation with EB and their families. I also post a little on Debra Norway’s Instagram account @debranorge and I’m holding a lot of presentations about how it is to be young and live with a chronic illness.

5.  What brings you hope/joy when you're having an especially tough day?

I will definitely say that music brings me much joy when I’m having a hard day. I’m always listening to music while I do my dressings, and it always put me in a good mood. Other things that bring me joy is to be surrounded by the people I love and care about. That always gives me a lot of energy.

6. Have you ever met another person with EB? If so, what was that experience like?

Yes, I’ve met so many with EB through social media and Debra Norway. One of my best friends has EB, and I like to call all my friends with EB my EB sisters and brothers. I feel so lucky to have them all in my life, and it really makes it easier to live with it when you know someone in the same situation as you.

7. What are your hobbies? Does your EB present any challenges in any of these?

I play flute and work a lot with my Instagram and Debra. It really makes my days so much better. When I’m not playing or working, I love being with my friends and family. Sometimes because of EB, my hands hurt so bad, so then it’s hard to play flute. And every time I go out with friends, I always have to think about what I do because of the consequences, even though I don’t always do, haha.

8.  What are your plans for the future?

My plans for the future is to get my education done and then start university, work hard with my social media and just live my life the best way that I can.

9. What message would you like to share with others impacted by EB?

If you have EB, I just want you to know that even though it can be hard, try to live with it and not against it. And I promise you it will be a lot easier to live with. You are strong, and you got this.

10. What message would you like to share with those who don't live with EB?

EB is a very awful disease in every way, both mentally and physically. So please, if you know someone with EB, even though it is relatives or just a friend, take good care of them. But try to treat them just as a normal person because that’s what they are. People with EB is one of the bravest people you’ll ever get to know.

Thank you, Martine, for sharing your story! You can connect with Martine by sending her a message on here profile here.

If you would like to contribute to the EB Connect Spotlight series, please email [email protected] or send a private message to Aigerim!