Grace’s Story

My NMOSD journey started when I was 15 years old, back in 2009. After having pain in one of my eyes for a week, I was sent for a vision test. After thinking everything was fine, we were asked by the optician to go to hospital, to the eye clinic, and hand them a letter.

So, off my family and I went to the hospital and gave them the letter. After many further checks, bright lights in my eyes and three other doctors all checking, I was sent up to the ward for the night and given my first lot of steroids.

This pattern continued for the next 10 months: every few months having the pain back but no explanation. I was diagnosed with having Optic Neuritis in May. During September, I was seen by one of the hospital consultants whilst having the pain, and they suggested having a new test that could determine the reason for all the recurrences. (ON normally happens about twice on average – I had eight in total.)

On 1st December 2009, I had an appointment with my consultant at Queens Medical in Nottingham.  That afternoon I was diagnosed with having NMOSD and we were told there was a very small chance (1 in a million) that it would progress and move into another part of my body.  We were given the signs (just in case) to look out for, and were instructed to call if any occurred.

Two weeks later I started having back pains, and also feeling very faint and dizzy when taking part in my Sports at school. My dad called the hospital and relayed my symptoms and an MRI scan was arranged. The MRI scan was booked for Christmas Eve: 9am came and I was taken into the scanner, having contrast put through me as well, and two hours later I was on my way home.

After just getting home we received a phone call from the hospital asking if I could come back in to be put straight onto the ward for steroids as they had found that the NMOSD had moved into my spine.

I spent the Christmas in hospital as an inpatient.  Owing to the severity of the attack I spent the next month in a wheel chair, and having to go to school was the hardest.

My classmates that had known me all my school life turned their backs on me, and many said that this was just for attention as no one knew the condition.  Throughout the rest of school I had managed to move from the chair to crutches, which were better, but I suffered many times with Depression.  I couldn’t take part in the sports I loved and from this my GCSEs suffered.

I was trying all sorts of different medication over the next two years to keep the NMOSD away and get me back some stability but after a few months I would relapse and the medication stopped working. I was also referred up to the Walton Centre in Liverpool to see the team to help with the medication and rehabilitation.

During one of my attacks in back in June 2011, I was asked if I wanted to use a different 6-monthly medication.  Rituximab is still a trial medication for many, and for some it hasn’t worked.  I have been on this medication for year and half now and so far (touch wood) no more relapses!

I managed to get to 6th form, and I’m now studying at university close to home and it’s all going well.  During this year, though, the medication failed, I had a minor relapse and I’m still recovering – but I’m staying positive and heading in the right direction.