Name: Ilva Johannsdóttir Madsen
Basic info: I am 26 years old, and I live alone in an apartment in Oslo, Norway. Usually, I introduce myself by saying I’m from Niceland, because I am half Norwegian and half Icelandic.
I got my bachelor’s degree last month in art history and visual studies.
Updates since the last interview: Probably the biggest thing that has happened since my last interview is that I feel like I am my own, independent person now, thanks to my assistants. In my last interview, I had recently moved on my own and just started having assistants. I feel like I have the freedom to create my personality, independently of my family. That’s a form of freedom, especially when you have early-onset FA.
I also have a bachelor’s degree now, which gives me so much motivation knowing I can accomplish whatever I put my mind to.
Recently, I have gotten really into crocheting and knitting. Right now, I’m crocheting a Baby Yoda figure.
When did you start working out with a personal trainer? I started in February 2025.
What made you choose this? I have gone to physical therapy since I was 10 years old, so I needed a change of scenery. I also found a personal trainer attractive because he can help me with my diet. I have type 1 diabetes because of FA, so my health requires a lot of focus on my diet.
How did you adapt this to your symptoms? When searching for a personal trainer, it was important to me to find someone with experience working with someone who uses a wheelchair. My first appointment with him, I just said I have a neurological disease and explained a little how FA affects me. And then we figure out what works and what doesn’t work as we go, but my personal trainer is creative when it comes to exercises! I do exercises with my own body weight, yoga elastics, and weights.
I’m not afraid to try new things; that’s when you figure out what works for you.
Do you have anything advice to give? Don’t be afraid to try new things. Sometimes you fail and that’s ok, cause you can’t have ups if you don’t have downs.
I also thought the other day while working out and dying cause I was so tired; what a privilege it is to be exhausted from working out. Would I prefer not to have FA? Of course, but instead of focusing on the abilities I don’t have, I should focus on the ones I do have.
Interview by
Jakob Mitterhauser
Edited by
Brittany Sommerfield
Please note that this post represents an individual’s experience and is not medical advice. Please consult with your doctor about the safest and best way to manage your FA diagnosis.