Niamh’s Story

Hello! My name is Niamh. I am 14 years old and live in Wales. I was diagnosed with NMO at the age of five, after waking up one morning completely blind when I was four years old. I was diagnosed with NMO ten months later after a further two relapses – one of which left me paralysed for a few weeks. I was tested then for the NMO antibody, which tested positive, and I was put on immunosuppressive treatment to prevent my immune system from attacking my nerves.

I can remember being in and out of hospital lots at this time, but luckily I only remember the fun things like playing and building Lego with the other kids. I had two more little relapses while my medication was sorted out and luckily, with medicines, I haven’t had one in the last nine years. I am, however, now registered blind and NMO also affects my mobility owing to spinal cord damage. I have been on steroids for the last year and have had to come to terms with being in a wheelchair as I have lost so much strength and gained lots of weight. That has made me very unhappy – but I realise there is more to life than worrying about my weight or other people’s thoughts.

This happened because they needed to increase my immunosuppressive medication, Azathioprine, but as I was growing my body reacted badly to the increased dose. I became anaemic and they needed to stop the medication and put me on steroids to stop me relapsing.

I am now on a different immunosuppressant called Mycophenolate and trying to wean off my steroids but it’s a long process as my adrenal gland has stopped working properly. I currently take between 15- 25 tablets a day.

My poor ability to sense hot and cold can cause me a problem with burning on radiators or bath water, so I have to be careful.

Although I have this illness I still attend a mainstream school where I am fully contracted in Welsh and English braille. I use font size 72 whilst typing and read size 36. My strongest subjects are Science and Maths and I am on the highest level that you can get, even though I have poor attendance due to chronic pain and fatigue. I have had to drop lots of subjects apart from my core subjects and Art, to enable me give my full potential in these subjects.

I enjoy doing tactile colourful Art and have a unique colour palette as I am colour blind. My future goals are to help others in challenging situations as a therapist. At school I am given support in every aspect of my education. I have a one-to-one whom I have had since I was seven years old. We are really close and she helps me with all aspects of my life. I also have a Braille teacher and a mobility officer who helps me develop life skills. I was in the process of getting a guide dog, but I decided against it as my mobility is unreliable at the moment. I am also able to use a cane when my mobility is good and can be quite independent.

Although I seem happy most of the time, I have suffered with mental health issues from the frustration of having unexpected changes in my health, along with the normal teenage girl issues and having a rare chronic illness. I have seen counsellors and a psychologist to help me process my feelings in a healthy manner. I have accepted that I have an illness but I am still determined to do everything that people say I cannot, which can end badly some times. I set my mind to doing things which are physically impossible in my situation, which can lead to me being very fatigued afterwards.

One of the main things that frustrates me about my illness is the fact that I can feel great one day and then the next day I am in bed because I have overworked myself the day before. The inability to attend school regularly creates a lot of mental exhaustion because I stress myself out about not reaching my full potential.

Aside from all this I enjoy normal teenage girl things like Netflix, sitting in the sunshine, chatting with friends, doing make up, shopping, and watching hair and beauty videos. One YouTuber in particular who inspires me not to be defined by my illness is yesterdayswishes. I have an illness and I will not let it define me or be changed by other people’s unintelligent views.