I’m a normal teen ... but I have arthritis

When I was 14, I developed pain and swelling in my joints. After months of tests and hospital stays, I was diagnosed. I’m 17 now and I recently abseiled down a cliff, says Siobhan O’Shaughnessy

MY name is Siobhan O’Shaughnessy and I am 17 years old. I am a normal teenage girl: make-up, music, concerts and a boyfriend .... except I have juvenile arthritis.

Three years ago, I was attending school with my two brothers. We were all three now attending secondary school, much to my mum’s delight. My transition into secondary school was going smoothly. I loved the different subjects and that I didn’t have the same teacher all day. Every morning I would be first up out of bed while my parents shouted at my brothers to get up.

Then something changed, something I didn’t like. I came home from school tired, extremely sick, and in pain. This continued day after day, until I started to get pains in my joints, and especially in my knees. My mum and dad brought me to the doctor. It took many blood tests and return visits and it was decided that I needed to go into hospital. During my stay in hospital (actually a couple of stays), all my blood tests came back clear, but the doctors could see that I was very sick.

During the time that it took for my diagnosis, there were many suggestions by different doctors, including that I was developing a type of auto-immune disease. At that point, I didn’t care about the diagnosis: I just wanted someone to ease the pain. My parents took photographs of my swollen joints, especially my knees, to show the doctors, and those photographs were helpful in assisting them with their diagnosis. As the saying goes, every picture tells its own story.

In the meantime, I was missing out on school and had home tuition to help me keep up with my class work. The majority of my school friends kept in touch with me and helped me through tough days. It’s at times like this that you find out who your true friends are and, thank God, I have many.

Eventually, I moved onto the rheumatology department, from paediatrics, at my local hospital, as I had just turned 16. It was in rheumatology that it was recognised I had a type of juvenile arthritis.

I was put on many medications to bring down my swollen joints. Many of these medicines were severe on my stomach and did not work for me. Many different medicines were tried and I had regular blood tests, scans and x-rays, and many doctors’ visits.

A very nice consultant at Cork University Hospital did everything he could to ease my pain. Along with my local GP, he was the first doctor I felt could help me, as he is very easy to talk to. He arranged for the overall care team, a cardiologist, a physiotherapist and a gastroenterologist, to help me through my illness.

With such a good team helping me to recover (which took time), I am glad to say that I have just started fifth year and the Leaving Certificate programme.

I attend Pobalscoil in Youghal and have fantastic support from my year head, Ms Kent, and from Ms Cusack. They certainly make it much easier for me to attend school and are very supportive of my illness, and understand my needs, due to my mum’s communication with the school.

I am on a daily injection of Anakinra (a very expensive biologic drug) that is helping me through each day. At first, I didn’t like taking the injections at all, but with the help of our family doctor, and my parents, I now take the injection every day without even batting an eyelid.

On the plus side, I am so overwhelmed by the support that I got from Arthritis Ireland. This organisation has helped me to overcome so many obstacles and I have been away on a week-long trip with them to a youth convention in Estonia.

I have made so many friends through my illness, people I might otherwise never have known. I now have friends in many European countries, and with Facebook it’s very easy to keep in contact with them all. A recent trip to Birr, Co Offaly, with other young teenagers and leaders from Arthritis Ireland, helped me to face my fear and abseil down a cliff ...Yes, me, the one with the fear of doing anything outdoors to do with sport, abseiling down a cliff, and all thanks to the encouragement and support of my arthritis friends. Every year I look forward to the JA family day in Dublin Zoo, when I get to meet up with them all again.

So, that’s me.

From almost not being able to get out of bed a few years ago, to this summer, abseiling down a cliff!

* National Arthritis Week takes place from Oct 8-15. See www.arthritisireland.ie and www.arthritisandexercise.ie