I have Neuromyelitis Optica, a extremely rare autoimmune condition affecting 1 in 5 million people. It can be characterised by relapses (attacks) of the optic nerve and spinal cord, which can cause vision problems and sight loss.
NMOSD
Neuromyelitis optica (NMO), also known as Devic’s disease, is a rare condition that affects the spinal cord and the nerves of the eyes (optic nerves). It can cause a wide range of symptoms, such as weakness, blindness, nerve pain and Cyclical vomiting.
My Story.
I’ve got a condition called NMO. It’s an immune system disorder that specifically affects my optic nerve, and I’ve lost a lot of eyesight from it. For other people with NMO, it can also affect their spinal cord or brain, which can make them feel sick. I have had these symptoms along the way; however, they were short-term problems that usually come and go.
I was diagnosed with this condition on April 17th, 2018, when I became vulnerable and prone to catching colds and viruses. From the age of 11, I was frequently pulled out of school due to unexpected nausea and vomiting. Little did we know at the time that these were, in fact, symptoms of Neuromyelitis Optica.
The vomiting, nausea, and dizziness gradually got worse over the years from 2013 until 2016. This is when I had the worst episode of these illnesses. Since it was a recurring issue that was so generic, unfortunately, the doctors and nurses who were looking after me at that time could not diagnose me with anything.
Not knowing what was going on put a lot of pressure on me (as a young adult) and my parents. It was a traumatic experience—the same old trips to A&E, the fatigue, falling asleep nearly anywhere and everywhere, the vomiting, not being able to eat for days or even weeks, IV drip fluids, and missing school. It just seemed so isolating, dark, and depressing. Only to find out this was not even the start of my diagnosis.
In November 2017, I woke up one day getting ready for school and felt very off balance. Being me, I decided to ignore it and carry on with the day. I remember being at school and feeling the worst shooting pain at the back of my eyes. Things started to slowly look ashy and black; I felt dizzy and sick. No one knew what was going on. My mum and I decided to take a trip to ophthalmology to see whether my eyes were healthy and okay, as this shooting pain didn’t leave. I remember the doctor saying to me, “Runako, your eyes are healthy.” However, I was experiencing a series of serious migraines, so the ophthalmologists advised us to go to A&E that night. They took a series of blood tests and ECGs, but furthermore, they could not find anything wrong with my body. I was given an appointment for an MRI, and the results showed that I had inflammation of the optic nerve, but no actions were taken at the time. My vision started to deteriorate over the months from November 2017 until February 2018, where I battled through my Year 11 school year while having severe medical issues. My vision kept deteriorating, and no doctor or consultant could diagnose me with a condition.
Until April 17th, 2018, when I had a doctor’s appointment, my mum and I sat there for an hour while he rambled on about my past medical history. I was becoming restless and annoyed, so I asked what my blood results looked like. The doctor looked at me, then turned back to his computer screen, before looking back at my mum with panic in his eyes. I remember his exact words: “Shit, she’s got MS.” From then onwards, I was rushed to Great Ormond Street Hospital and diagnosed with NMO.
Ever since that day, I have had multiple treatments to prevent relapses and alleviate other symptoms of the disorder. It was very hard at the start to get used to my “new life” living with a chronic illness for the rest of my life—changing career paths and explaining to friends and family what I go through on a day-to-day basis. However, I have definitely learned that you have to live life to the fullest, and all I can do is thank God for how far I’ve come, even to share my story on a platform such as my own website for people who need motivation.
GOSH
Great Ormond Street Hospital (GOSH) has been a huge part of my journey with NMO. I would like to thank specifically; Kati Hanson ,Dr Hacohen, Dr Hemingway, Starfish Ward, Koala Ward, The clinical researchers team and lastly Paula who is my vision liaison officer. Without these amazing and hard working bunch of people, I would not be who I am today.
Gosh have performed and provided many services to try and help my vision normalise. As we know NMO has no cure but they have provided specific research trials to prevent any further relapses.
Whenever I’m sad I know that someone is always on my side whether that’s a hug from Katie or one phone call away from Paula and Inkatha. Thank you fir everything you do GOSH!
What I’ve learnt from my experiences
From my challenging experiences from dealing with a chronic illness, I have learnt a number of techniques to deal with my problems.
First of all I had to learn that I have a condition, it’s going to be there for a long time and I must listen to my body. Everyday will not be the same and I must have a positive outlook on things even if it’s very hard.
I’ve also learnt that not everyone will understand what you’re going through but that is okay, You must find a balance and keep it steppin’.
You are not like everyone else, yes you might have to do things differently but your condition/chronic illness does not define you. you are amazing!
CHRONICALLY RUE 