People of my community: Norway (Europe)

Hello everyone! My name is Ilva and I am 20 years old. I am half Norwegian and half

Icelandic but I have lived in Norway my whole life. I was diagnosed with Friedreich ataxia when I was 9 years old. FA (If you don't know what FA is then, CLICK HERE) only affects 1 in 500.000 Norwegians so it’s a rare diagnosis here. When I was diagnosed the doctor couldn’t tell us much information about FA so my mom had to read about FA on the internet. I am currently studying art history and visual studies at the university of Oslo. I am really interested in fashion, music and of course art. I love trying new foods and learning about different cultures. I have no idea what I want to do when I’m done with my studies however I do know I want to do something creative. I have a very girly side that loves pink, glitter and all things like that. But I also have this rock´n´roll side that loves Nirvana, leather jackets and horror movies. What's the best thing about living in your country? The nature is absolutely stunning and the air is so clean. There is not a long way to nature no matter where you are and Norway only has a little bit more than 5 million people so it doesn’t feel super crowded pretty much anywhere. I love clean nature air, the smell of spruce trees are very nostalgic to me and reminds me of home.

Norway is also very good at helping people get an education. Education doesn’t cost a lot (apart from private school) and you don’t need good grades to get into university unless if you want to study medicine, psychology or subjects like that.  2. How do people in your country treat you as a disabled woman? Most people are polite and want to help if they see me struggling with something. Of course a lot of people stare but I don’t find it mean or insulting anymore. All humans are curious when they see something that’s not normal to them. As a woman I have of course hear some sexist comments which has made me a feminist. I believe that everyone has equal rights no matter what their gender is.

Being a disabled woman in a wheelchair I often get pitied. I really don’t like that. I do think people who show pity only means well but it makes me feel so small. Also, people talk to the person helping me about me. If you are wondering about something that’s about me, just ask me.

But Norwegians are mostly good at treating people equally. 3. Some bad incidents you’ve faced?

In 2018 I was forced to take a 4 month break from Imukin. Little back story; Imukin is used for people with CGD but dr. Roberto Testi found that Imukin helps increase frataxin levels. I've used imukin since I was 14 years old and it pretty much stopped my progression until I was 18 years old.

So in december of 2017 they decide to change Imukin`s supply brand which meant Imukin wasn’t going to be available for a while and they didn’t know for how long. At first I was afraid but I thought it was going to be fine.

After a few months I got severely depressed, most days I didn’t have energy to get out of bed and go to school, I stopped talking to people because I didn’t have any energy and I was so depressed. I still went to my physiotherapist but I didn’t find any joy in it and she too noticed that I got worse while doing exercises. Later I found out that my heart had gotten worse while I was at a checkup at my cardiologist.

When I started taking Imukin again my depression got slowly better and I got back my energy but I still have gotten physically worse. I'm trying to get back to the shape I was but I’m afraid my progression got worse in those 4 months. 4. How are the support groups/medical facility? Norway has very good healthcare system. The medical facilities are well organized and advanced. There’s only about 20-30 people with FA in Norway so there’s not many support groups, but having contact with people with FA in other countries is great! We have to pay for doctor visits but we can apply for economic support to cover medical expenses. So if you have a chronic disease you can get economic support to cover everything from medicine to travel expenses to medical checkups and other expenses. Norwegian hospitals are very clean, well organized and you feel very safe in the hospitals because doctors and nurses are very well educated. Norwegian medical system is very advanced.

5. What`s 3 things being disabled has taught you? -That there is no shame in asking for help and most of the time people are happy to help. -How strong I am both physically and mentally. I'm amazed by all the thing my body can handle and all the horrible things my body has been through and I’m still alive! -Being disabled doesn’t make you weak! You can achieve anything you want. Of course you should be realistic about what you can and can't achieve but if you just try you’ll be amazed by what you can accomplish.

6. Why did you start your blog? Because when I was depressed I felt so incredibly alone and I tried to find someone with FA talking about depression. Of course there’s a lot of people talking about depression on the internet but being depressed while you have FA is a bit different. So I took matters in my own hands and started a blog. My goal is to make people feel less alone because I know how awful that feeling can be. 

7. What motivates you? What motivates me is my future. I have followed gene therapy for many years and it's getting close to the finish line. Walking in high heels, traveling without thinking it has to be accessible, going up and down stairs, being able to help others carrying stuff and so many more things. Also my family motivates me. But my best tips is telling yourself you can do it, your internal conversation is the strongest form of motivation. I will be posting Hasitha´s interview on my blog lonesomesparkle.wordpress.com And you can follow me on my socials:

Instagram - ilvajm

Twitter - ilva madsen

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