‘Everything I did was decided by arthritis, not by me or my family’
At one point I lost all faith that I would ever be well again. I just wanted to live normally, like my friends
Veronika Kapsova: ‘A new monthly biological injection treatment has helped me get my life back on track again.’
I am 19 now but I was only two years old when I was diagnosed with one of the rarest and most aggressive forms of arthritis, which I had been living with from the day I was born.
As a baby, I was constantly crying and in pain but despite numerous invasive tests, the doctors in my native Czech Republic were at a loss as to what was wrong with me, and what was causing the inflammation and pain. I was temporarily blind at one point. That’s not something most people expect when they hear the word arthritis. But that is my reality.
I was eventually diagnosed with systemic juvenile onset rheumatoid idiopathic arthritis, which is a form of arthritis that affects only 3 per cent of people worldwide. It affects the whole system: the small bones, big bones, internal organs, brain, optic nerves and much more.
There was no specific medication to treat my condition at the time. I was put on steroids and antimalarial medications, which were grossly inadequate in the face of the violence my immune system was inflicting on me every day.
I found myself under the thumb of this disease. Everything I did was decided by it, not by me or my family. And it never ruled in my favour. I was unable to do anything physical such as walking, running or even writing. I was unable to be near anyone who was sick or even had a slight cold.
The symptoms included vomiting, fever, stomach pain, constant drowsiness, aching joints, blinding migraines and burning, bloodshot eyes. Even my organs hurt. It was a vicious circle; the higher my fever went, the more my joints ached.
At the age of eight, a bad flare-up attacked my optic nerves and left me temporarily blind and, not long after that, I ended up in a wheelchair and was unable to walk for months. The arthritis also affected my heart and I was diagnosed with water on the pericardium in 2007. I had a number of surgeries to drain the water and had a magnetic shunt implanted in 2009.
I missed so much school that my mother had to home-school me. She did this along with her job as a theatre nurse. When she wasn’t there, my brother helped me with my schoolwork. When I was in pain, I rested and when I was pain-free, I studied. Despite everything, I managed to pass all my exams.
The doctors kept stuffing me with high-dose steroids because there was nothing else available at the time. They helped relieve my symptoms but made me worse. I gained 9kg in three months, and at the age of 12 I weighed 110kg, which was difficult.
My dad had lived in Ireland years ago and he thought the health system seemed good, so we moved here in 2006. The upturn in my health I had hoped for didn’t happen straight away, though. In fact, it got a lot worse before it got better. Since then I have had a benign brain tumour, which required numerous surgeries; I was treated for meningitis; and diagnosed with chronic migraines and systemic Still’s disease, a disorder characterised by high spiking fevers, a rash and arthritis.
At one point I lost total faith that I would ever be well again. I had been through so much. I just wanted it all to stop and to live normally, like all my friends. Thankfully there was light at the end of the tunnel.