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I’m a 21-year-old student from Cork, currently studying for an undergraduate degree in UCC. To get where I am today was not easy and I would like to share my story with you. My story begins in May 2013 when I was aged 13. I had just come to the end of my first year in secondary school. In the months prior to this, I had been experiencing slight pains in my hands and feet. I loved sport and played a lot of camogie and Gaelic football with both school and club teams, and thought the pain was a sport-related injury. My first set of summer exams were just completed when the pains in my hands began to get worse. My mum made an appointment to see the GP and I had my diagnosis by the end of that week. I can clearly remember my eyes filling with tears hearing the doctor tell me that I would have to take some time off from playing sport and that any form of contact sport was not recommended.

I was told that I had juvenile arthritis, but more tests were to be done to determine which type exactly. With this, I was also diagnosed with Raynaud’s phenomenon, a condition which affects the blood vessels. I could not comprehend how a person my age could have arthritis. Being a child, I had always associated it with older people. Part of me doubted the doctor as I did not want to believe that I had anything like this and I began doing my own research, wanting to prove it was something else.  

At the time I was about 5’11” (I’ve always been tall) and so I thought I had just been going through a phase of growing pains. I was prescribed short-term steroids to calm the inflammation and I was referred onto a children’s consultant in the CUH. It was a few weeks before I was seen, but an overview of my entire body confirmed that this was in fact a form of arthritis. In the following months, the pains got worse, I was experiencing stiffness in the mornings.

There were even tears before school sometimes, as simple tasks like doing the buttons on my shirt became a challenge.

I began to do my own research on what causes the disease and how to get rid of it, but I was told prevention from further damage was the main thing to be concerned about. I went from playing on the pitch to watching from the sideline, which really affected my overall mood, as sport was a great outlet for me to have fun and keep fit.  

School life got harder too, as I soon noticed my hand would get sore after a short time from writing, as well as experiencing knee pain from carrying the weight of heavy books around all day. I had tried hand supports and occupational therapy, but nothing really relieved the burning sensation and swollen joints. It also began to impact my social life with friends, as I was lethargic and conscious of my condition. A few months later I was transferred to the children’s rheumatology department in Our Lady’s Children’s Hospital in Crumlin. The doctors there were specifically focused on arthritis in children, so I had hope that they would be able to solve it. They went through possible solutions and explained to me that the main aim was to prevent the arthritis from getting any worse, and that long-term medication was the best solution. They introduced me to a commonly used disease-modifying drug (DMARD), which I would self-inject once a week. I remember crying through the whole appointment as I listened to what could potentially happen if I did not try something before it got any worse. Personally, I am not so keen on taking anything as I like to allow the body to repair itself, so agreeing to trying this was not easy for me. The following week a nurse came to my house to demonstrate to me how to use the drug. I learned about the side effects and agreed that a Friday would be best to take it as I wouldn’t have school the day after.  

The next nine months were horrible. I was sick every Friday night and Saturday, and by the time Monday morning came around I was extremely tired. There wasn’t a huge improvement in how I was feeling and, in the mean time, the pain had moved to both joints in my jaw. My entire face would swell and I had trouble sleeping at night due to the constant clicking of joints in and out of place. I was diagnosed with TMD (temporomandibular disorder) which affects the jaw joint and facial muscles. I got steroid injections into both sides of my jaw and also in my fingers with the hope that these would ease things. It wasn’t long before I was referred on to a professor in CUH who specialises in this area. Thankfully during these few months, I met with members from iCAN (the Irish Children’s Arthritis Network) which was great, as I got to meet with other teenagers my own age who were also experiencing similar pain. This network does exceptional work for young children and teenagers who need support and they provide a platform in which these needs are met. 

The following April, I met with the doctors again and I told them I would not continue to take the medication. My diagnosis was now described as a form of rheumatoid arthritis, but also enthesitis-related arthritis which specifically affects the ligaments surrounding the joints. They wanted to try out a different medication, which still was an injection, but would not have the same side effects. I agreed to try it out and a month later I was changed to another medication which I continued to take for a while. By this stage I was used to using the self-inject method and so I had no problems with doing it myself. The side effects were not as bad, but I was experiencing weight loss and hair loss, while searching for alternative methods to try to cure myself.

These symptoms especially affected my confidence and even my mental health began to suffer. I excluded myself from friends and I didn’t like being in school. I stopped eating properly which only made problems worse.

I ended up in hospital for a week the summer before my leaving cert, as I had lost nearly three stone in weight over a very short period of time. I felt helpless and that my life would continue the way it was going.  

Although it has taken quite some time, I am almost back to the person I was before any of this had happened. In 2017, I turned 18 and I was transferred back to Cork to the adult clinic in the CUH. I was still taking the biologic, at the time. I discussed with my doctors about coming off it, but was strongly advised to keep taking it, at least until the exams were over. I went against my consultant’s advice and stopped taking the medications four months before the leaving cert.

I knew I was taking a big risk, as I had no idea how my body would react, but I was confident in my decision. I am a driven person who always wants to achieve high, so I worked hard over the next few weeks. Thankfully everything seemed to be ok and I sat my exams with the help of a scribe which was a huge benefit to me. I was delighted with my results and am now studying French and art history in UCC; a four-year degree where I am spending third year studying in France. As for today, I am now in a place where I can manage my symptoms. I don’t like the cold as it seems to cause flare-ups in my hands and in my feet, but I’ve learned how to deal with difficult situations.  

I am currently medication-free and my symptoms have thankfully eased, apart from the odd day when I might get swelling in my hands. Since starting college, I have slowly introduced myself to moderate exercise both outdoors and in the gym and it has definitely helped my symptoms ease. In 2019, I signed up to do the Vhi Women’s Mini Marathon in Dublin in aid of Arthritis Ireland and I was proud to be raising money for a cause so close to my heart. I was delighted to have completed the run in just over an hour. The atmosphere on the day was incredible and I will look to complete it again. Also in 2019, I was a finalist in Miss Ireland.

My experiences have given me an understanding of both the personal and social struggles with coping with this disease, but there are ways for everyone to become comfortable and confident in how they deal with their conditions. It just takes time!