Childhood MS

This week, Sarah tells us her paediatric MS story. She is a child, she has MS and she has the support of her parents as they all deal with the challenges of this condition. 

Hello my name is Sarah*. I am 15 years old and like every other teenager I love my phone, my music and my very amazing parents. But there is something that’s different about me- I have been battling with MS and I am going to tell you my paediatric MS story. 

It started when I was 10 years old. At the time I loved playing with dolls and drawing pictures and dancing- a typical 10 year old. A neurologist diagnosed my MS while we were on holidays. I had lost the vision in one of my eyes. Even though the doctors on holidays had told my parents that I had MS and I needed to get home and onto medication, the doctors here in Ireland wouldn’t confirm that I had MS. They needed to see two lesions. 

For a good few months after being at home I had lots of tests and I never really knew what was going on. Fatigue and brain fog and adapting to the loss and change of vision was the worst for me. I could barely keep up with school and friends and missed a lot of time due to my tiredness and other symptoms. At age 11 I had my second attack - I could barely walk. I was brought into hospital but there was no MRI scan to see what was going on. I had a few ups and downs for the next few years. My third and fourth attack happened at the bold age of 13! I had just gone into second year in school and was finding it very difficult. I struggled to get into school everyday and keep up. If I went out at the weekend I would need Monday off school. It was hard to keep up with other teenagers my age. 

After getting through all of September in school, I fell sick again at the end of October. I got very bad headaches and I stared to lose vision in my right eye. I was taken into hospital with another IV drip of steroids. On the 12th of November I was diagnosed with MS in Ireland and I didn’t think much of it. All I was told was do not look it up on Google. My fourth attack I had while in hospital and I ended up in the intensive care unit. I don’t really remember much after that. I was weak and sick and very ill. I didn’t have much energy after being in hospital for many weeks but when I was released, it felt great to be home for Christmas. When I had fallen sick I lost a lot of friends; this was very hard. I felt alone and different. At age 13, I was put on medication. I had to inject three times a week into my thighs and stomach. It was one of the worst things that happened to me because all the side-effects were worse then the illness. 

All of the people I know of and have met with MS are older, have their education done, some with very successful jobs and here’s me I haven’t even sat my Junior Cert! But I am up for a challenge. This year I have taken up some new hobbies that I am hoping to continue with. I like to create videos and vlogs on YouTube. I love to write and I will never ever stop loving music.

There is no MS nurse support in Ireland for children with MS so I had to wait six months to see my neurologist before we could get the okay to go off the medication. As a child with MS I have very little support. I try to stay as positive with the help of my family. I am now 15 years old and keeping as healthy as I can be. 

MS is hard- it has really opened my eyes to see that nobody’s perfect and illness can be invisible. MS is unpredictable and it makes me look at the world differently. I would like to help other children who find themselves in this situation. I hope one day that there will be an MS nurse for children so that kids like me don’t feel so alone. 

Thanks for reading my paediatric MS story, 

Sarah x

*MS Ireland is protecting the identity of the writer; Sarah is not her real name. 

Oscar Monkey is an organisation for children with MS  

Most people living with MS are diagnosed between the ages of 20 and 40. It is uncommon for children to be diagnosed with multiple sclerosis. However, today we share a blog from a guest writer who was diagnosed at the age of 10. At the moment there is no MS nurse service for children living with multiple sclerosis. MS Ireland are committed to advocating for better neurology services for people living with MS. 

If you are a child with MS or a parent with a child with MS, please contact the MS Ireland information line on 1850 233 233