Let’s be honest here, this is what a lot people think. And why wouldn’t they?
Growing up, I, like so many, had what would be considered to be a “normal” childhood – a carefree child who enjoyed cycling my bike, going swimming, having days on the beach (when weather allowed!), running through fields playing hide & seek with siblings, climbing trees, kicking football, following my father around the farm and hating rainy days stuck inside.
I knew no different as my classmates were all doing the same things as I was.
So I continued to grow up that way, oblivious to the fact that not every child could do all these things too. But it wasn’t until I started working with Olive, here at MediStori, that I realised how wrong I actually was.
I was only working a few weeks when Olive said she had a hospital appointment to go to one day with one of her little girls. When I asked her what it was for, she told me her daughter had arthritis. I was beyond shocked.
How could an 11 year old little girl have arthritis? Would she not need another 50-60 years or so on her before she could have that? In my head, I truly thought it was a disease that only older people dealt with.
So thinking that I misheard her, I didn’t say anything as I didn’t want to appear silly. But a few days later I then heard Olive talk to another mum about it and it was at that time that I realised, no, I had not been hearing things (another sign of old age I was led to believe as a child but proven wrong here too!).
So without wanting to go too personal with Olive as I only knew her a little while, I began to look into it – what was childhood arthritis like?
After a bit of researching online I discovered that arthritis was when one or more joints become inflamed, swollen, painful or stiff and the person suffering from this may not be able to move them as far as normal. I learned that in children, the terms change slightly – to JA and JIA. JA is for Juvenile Arthritis – where the cause is known and JIA (Juvenile Idiopathic Arthritis) means that the cause is not known for the arthritis in the child. As I went on I was even more surprised to learn that every year about 1 in 10,000 children in Ireland are diagnosed with the condition – making it almost as common as childhood diabetes! It can begin at any age, although it most commonly shows up in younger children. [i] And just like arthritis in older people, the disease could affect patients more in the morning or during spells of cold weather. It could make it difficult to walk down stairs, put on socks & shoes, hold a pen etc. And while children could (when able) take part in most everyday activities, in some cases it could just be too difficult to do so.
I made a decision that after looking all of this up, I wanted to create awareness about it so as other people like me would know about it. And so I asked Olive if this was okay and could she enlighten me further on how it affected her daughter. She told me first that she herself had arthritis in her knees and that she got steroid injections for them. I was taken aback by this as Olive herself is young and I wouldn’t have ever known it by her – this is one of the things with arthritis – all too often because it’s invisible, people don’t realise how bad patient’s pain can be. Olive then went on and told me that Nicole started having symptoms back in 2009, just six weeks after a confirmed diagnosis of Swine Flu. Nicole’s little body quickly started seizing up and it got to stage where it would take her a half an hour to get dressed in the morning ; 15 minutes to get up and down the stairs and that Olive would have to put on her shoes for her because she couldn’t bend over. In the following years to come, Nicole missed weeks from school and that she had to give up nearly all of her sports and dancing because of the pain. The disease affected Nicole personally too – she struggled with being “different” from her friends. She got teased for the way she “ran” and so she stopped playing in yard at lunchbreak. All of this added to the overall exhaustion Nicole suffered from, made her further less willing to get involved in extracurricular things. Olive got physically upset as she told me how Nicole’s condition stayed like this for three years until eventually she got access to the specialist paediatric rheumatology services in Crumlin. It was there that Olive told me the team diagnosed her and she was started on anti-inflammatory treatments and weekly physiotherapy.
You could see visibly the gratefulness Olive had for this when she told me that it was only because of these interventions, that Nicole was 90% pain free now and started to act more like the little girl she used to be. Olives eyes lit up when she told me how Nicole now loves to swim [be it in heated pools as her joints get too cold and seize up]. She also said the best thing was the physiotherapist recommending the piano for Nicole as a way to exercise her little fingers and it was here they found Nicole had a talent that she may not have discovered otherwise!
After speaking to Olive, I went online to see if other parents came up with ways to help their children do “normal” activities. I found a mother who decided to think outside the box when her son wasn’t able to cycle a bike and she went and got him a go-kart instead. That way he was still able to do what other kids were doing, just in a different way, instead of being left out. As one mum put it to me, parents need to help their kids to try & try again, and if they can’t do it think of another way.
Another mother of a child with JIA had this to say:
One parent said to me recently, Misha looks fine, why all the drama about arthritis!!! I use the analogy of the basic Nokia mobile phone versus the iPhone. Misha needs to recharge fully to function on a day. If she is on Nokia mode, just listening and answering she lasts longer, but if she’s like the iPhone, using lots of data or apps etc. the battery wears down quickly, so she needs to recharge during the day. Juvenile Idiopathic Arthritis is different from adult arthritis.
I then came across Jerry Drumm’s story online, a young boy from Donegal who took part in an RTE documentary ‘This Is Me’ in July 2009. This programme told Jerry’s story, through HIS eyes – living with juvenile arthritis at only ten years of age.
There was also Peter’s story – another ten year old boy, who after numerous tests was diagnosed in Crumlin with JA in Crumlin Hospital. In the short video he talks about his friend’s reaction when he told them that he had arthritis. They too had the same misconception that I had, that only elderly people can have arthritis. Peter’s one wish is that there is “no such thing as arthritis and no pain or anything like that”.
There is any amount of information online about Juvenile Arthritis but this powerful video really painted the picture of what it’s like for people of any age to live with it. One young girl spoke up about her arthritis and said “it cheats my childhood” and “my arthritis frightens me”. More people said “I have arthritis. It is my abuser” and that arthritis is “pain that breaks me but is invisible to you”.
Now you may be wondering where did I get a lot of my information from on this painful condition?
Across the internet and the world there are many, many groups doing their bit to help. Thankfully! And here in Ireland there is also help, in the name of two outstanding charities – Arthritis Ireland and the Irish Children Arthritis Network [iCAN].
Arthritis Ireland is chaired by John Church and has been around for many years. They help people of all ages with this disease. They provide support to people living with all rheumatic and musculoskeletal diseases (MSDs) and related conditions which affect people’s ability to live well. They also fund pioneering research to increase the knowledge base and use that knowledge to transform the lives of people living with the disease and support the education of healthcare professionals and provide information to people living with arthritis, their families and carers.
ICAN is a newer charity to the market and is different in that it specifically aims to help children [and their parents and families] who suffer with arthritis. iCAN was founded by Wendy Costello who herself has a daughter who has had JIA since the age of three . Much like the parents association in schools, iCAN have an open door policy and express that “every parent of a child with JIA in Ireland is already a member of iCAN”. The organisation is led by parents who have had children with the condition and are all parents of children facing the daily rollercoaster of JIA . They aim to advocate, fundraise, educate and resonate with parents and children through their essential peer supports.
I watched one of their videos on their website and it brought a tear to my eye to think of little children going through such pain.
But one of the most startling things to me was learning about the drugs that used to treat JIA are often the same drugs used to treat cancer.
As I mentioned, I already knew that the drugs used for JIA were severe as I remember clearly when Olive’s daughter had to begin a new course of medication, but I still found it hard to read in black and white. Olive was so distressed at this time and she told me of her heartache of the thoughts of having to give her daughter an injection of methotrexate.
She hated seeing her little girl go through the pain of juvenile arthritis but she didn’t want to be the person that was going to add a little extra pain by using a needle to inject her on a weekly basis. She was so afraid of the short and long term side effects of it. But after a lot of talking with the specialists and the parents through the charities, Olive knew it had to be done to help her, so she ploughed on!
After the first day, Olive came in to the office and told me how Nicole had praised her for being so good at GIVING it and she couldn’t get over how brave her daughter was.
I now know that it has become part of their routine now and while I am sure they are used to it and don’t complain outwardly, I can only imagine how they feel when Saturday morning comes around. Sometimes people forget, as hard as it on all the kiddies suffering from juvenile arthritis, it also affects their parents. Both the child and their parents need support!
Just this morning as part of #WorldArthritisDay I came across this children’s #iCANHope for World Arthritis Day Oct 2015 video
So what did I learn from all of this?
I learnt that going through life many of us make assumptions. And the one thing I’ve learned is that things are not always as they seem.
We shouldn’t presume anything. If I had not started working in MediStori I would probably still be unaware of JA so I now hoping that this blog will make others, like me, realise, that it is NOT ONLY the old who have arthritis but some very brave young people too.