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Ilva Johannsdottir Madsen

Ilva 2Name: Ilva Johannsdottir Madsen

Age: 20 years old

Where do you call home? I am born and raised in the south of Norway. At the moment I live in Oslo.

Education degree(s): I recently started at the university. I study the French language at the moment, but I want to study something else this fall. Maybe art or something like that. I haven't totally figured out my future yet, but my goal is to write a book and to design my own clothing line.

Who do you live with? I currently live by myself in a student apartment.

What's a typical day for you? On days when I don't have early classes at the university, I like to sleep ‪till noon. My assistant comes to help me with whatever I need, and I spend my days reading, writing on my blog, doing chores, drawing or going on Pinterest and collecting ideas for my next blog post. I try to stay active, so if I don't have physical therapy, I stretch and do some workouts. I also like to spend some quality time by myself just relaxing, doing my nails, or putting on a facial mask.

How long have you known you are living with FA? I was diagnosed in 2009 when I was nine years old.

Ilva 3Are there any others with FA in your family? No, only me as far as I know.

Describe your transition from walking to walker/wheelchair. When I was 12 years old, I needed to hold on to walls and furniture to keep my balance. It was at that time, my spine started to curve, and it made it even more difficult for me to walk straight. But I refused to use a walker because of my stubbornness, and I didn't want to be different. After my scoliosis surgery, I started to use a wheelchair. But after seven months of rehabilitation, I could use a walker. At the end of high school, I started to use a wheelchair full time.

What do you like to do to stay active and what type of exercises work for you to stay strong? I work out with my neurological physiotherapist two times a week. And I try to stay active in everyday life.

Do you have any hobbies or special interests? My biggest interests are fashion and music. I like to go to concerts, museums, go shopping and draw. And I recently found a new passion for getting tattoos.

What is a good trick to make daily life easier? It's important not to stress about being overly active. It's better to take one day at a time. And don't take yourself too seriously.

When FA gets you down, what do you think/do to feel better? I think about what my life will be when I get gene therapy. I imagine myself sitting in the Plaza Torre Eiffel park in Paris and eating French bread with French cheese and reading a book. Just enjoying life. I also think about the accomplishment I'm going to feel when I get gene therapy and am done with rehabilitation.

IlvaWhat is one way living with FA has POSITIVELY affected your life? Living with FA has shown me how strong I am. And it has shown me the kindness in people around me.

What is a favorite motivational quote of yours? There are a lot of quotes I love and give me motivation. 'Life is tough, but so are you.' and 'Whatever is your goal, you can get there if you are willing to work.'

What is the best advice YOU could give to a person who has been newly diagnosed with FA? I would say that you will have to go through a lot of difficult times, but you will come to see how strong you are.

What is the first thing you want to do when a cure/treatment to FA is found? There are so many things I would do! One of the things I would do is travel to different countries and just feel free. It would be great just to be independent of a wheelchair or help from other people. Just to be the person I want to be. And I plan on traveling to Paris and buying myself a Chanel bag.

"I have FA, but FA doesn't have me." What does this statement mean to you? How do you live your life in the face of adversity? This sentence means to me that you are not defined by FA. FA is not all that you are. It's important to remember this because it's easy to forget who you are when you get an "FA mentality." You can't stop thinking about your past/future and live your life in your imagination because it's too hard to live your life as it is. You get so consumed by FA that it's difficult to think of anything else besides FA. Remembering that you are a person with feelings, thoughts, emotions, and opinions, not just someone with FA, is so important.

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