'I was only 12 when it hit me'

At the tender age of 12, I became the youngest person in the southern hemisphere to be diagnosed with multiple sclerosis (MS).

I didn’t know much about MS when I was 12. I had done the MS read-a-thon and walk-a-thon in primary school, but I was far more interested in getting the prizes than in information about the disease. My concept of it however was something that affected greying old ladies. I certainly did not think, sitting in the presentation assembly in year six, that I would be diagnosed less than 12 months later.

I can’t clearly remember when I first noticed something was wrong. I can remember watching Neighbours with my younger sister and having to ask her what was happening and wondering why I couldn’t see properly. I remember being nervous about saying goodbye to friends at the end of school because I couldn’t see their faces and wasn’t sure who it was. I started to lose sensation in my fingers and toes and constantly felt like I had pins and needles. A few weeks passed like this until one day walking home from school I was very nearly hit by a car. My mother rang the doctor the next day.

My dad was away the day we went to see the GP. I remember the doctor putting eye drops in my eyes. The first drop had no effect but the second made my vision go yellow. I remember the look of concern on the doctor’s face that I only had a reaction in one eye. Then it was off to an ophthalmologist. More tests. More looks of concern. Next an MRI. I remember my dad suddenly appeared, having chartered a plane from Tasmania to be there with my mum. I remember sitting outside the room and my mother came out, she’d obviously been crying. She sat down beside me and hugged me and told me we had to go to the hospital. My dad carried me to the car.

I was in hospital for a few weeks while multiple tests were performed and they tried to figure out what was going on. I can’t imagine what those few weeks would have been like for my parents. After some time it was decided that I needed a lumbar puncture – a procedure to obtain fluid from my spine. I am so thankful I cannot remember this, I feel very sorry for my parents that they can. However that spinal fluid is my legacy to science because it showed no protein and confirmed that MS could occur in children.

When I was first diagnosed I was having episodes 3-4 times a year. When this happens I lose either my vision or my feeling below the waist, and over the last few years I have started to suffer severe pain around my face and head. I would usually be in hospital/recovery for about three weeks. That would add up to months of being absent from school. It was hard to keep up, socially and academically. Not a lot was known about MS ten years ago and trying to explain to teachers and peers was difficult. I encountered skepticism many times from both teachers and friends regarding my condition.

I went through a particularly difficult period at the age of 16 and decided I didn’t want to be medicated anymore. Something people might not know is that living with MS can be unpredictable. Although I wasn’t being treated I felt fine for a while until I suddenly relapsed and again, my vision diminished drastically. I now know that MS is a disease that needs ongoing management.

I have been on multiple treatments over the past 11 years with differing success. I am now on an oral treatment which seems to really work for me and gives me previously unimagined freedom. Last month it had been 18 months since I last relapsed, my longest stretch yet.

At 12 years old I did not comprehend what MS meant to my life. I don’t think I really came to terms with it until I was about 19, and even now at 23 I am still coming to terms with it. However I do know that so much has changed in ten years, so much more is now known about the condition and so many more options are available, and I certainly feel positive and excited about my future.

Today is World MS Day, and my hope for MS is that there will one day be a cure. I’m grateful for initiatives like Kiss Goodbye to MS and the continual research that is being undertaken and the treatment options that are helping many living with the disease.

This post is supported by Multiple Sclerosis Research Australia (MSRA). MSRA’s mission is to accelerate Australian MS research toward the prevention, better treatments and a cure for MS. To see how you can support MS research, through initiatives like Kiss Goodbye to MS, please click here.

The views/opinions expressed in this article are those of the author only. For medical advice please consult a healthcare professional.

This post is sponsored by MSRA. Comments on this post are just for this post. If you want to talk about the IDEA of sponsored posts or the choice of advertisers please click here. We will be reading all those comments too for feedback.