‘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
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.
I was referred to Dr Orla Killeen, a paediatric rheumatologist at Our Lady’s Hospital in Crumlin, who saved my life. She was so amazing that I cried when I had to leave her at the age of 18 although my current rheumatologist, Dr Paul O’Connell at Beaumont Hospital, is also fantastic.
Killeen started me on biologics, a newer type of drug for the treatment of rheumatoid arthritis. Biological therapy is a treatment designed to stimulate or restore the ability of the body’s immune system to fight infection and disease. After a couple of months, I started to get better. My life flipped from 60 degrees to 360 degrees. I was able to go back to school, I started going to the gym and socialising. I got my strength back and my moods changed. I was happier; a different person.
I remained pain-free for three years until 2012 but Killeen had warned me there was going to be a day when I stopped responding to the treatment as my arthritis was so aggressive. The year 2012 was a bad one. I was repeating my Leaving Cert and I missed a lot of school but I was determined to keep studying, even in hospital.
In January 2013, I started a new monthly biological injection treatment which has helped me get my life back on track again.
It took about five months to kick in but I am now pain-free most of the time and I am able to live my life. I’m at the gym, losing weight and training for the Flora Women’s Mini Marathon in June in aid of Arthritis Ireland.
The reason I chose to do it for Arthritis Ireland was to say thanks for all the support they gave me when I was younger.
In 2008, I attended an activity weekend break (now the JA Road Trip) with a friend of mine. We did so many activities that it made me realise how much I could do instead of just sitting at home. Since then I have been doing a lot more and I am a member of the committee of the Kilkenny branch of Arthritis Ireland.
I am doing legal studies in Carlow College and have applied to Waterford IT to study criminal justice for three years. I’m not sure if I want to go into law or be a detective but I plan to go to UCD to do a law degree and then a Master’s.
When I look back at what I’ve gone through, it is extraordinary to think that this year I will be taking part in the Mini Marathon. It’s a 10km course that will test me to the very maximum. I’m confident I can do it, though. I’ve conquered greater challenges.
Arthritis Ireland invites people to join Team Arthritis Ireland to run, jog or walk the Flora Mini Marathon on June 2nd . If you would like to sign up, contact Orla at Arthritis Ireland to register your support. Call 01-6470209 or email firstname.lastname@example.org
In conversation with