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Living as an Adolescent With Arthritis

The first in a series of posts celebrating the launch of the Arthritis Research UK Centre for Adolescent Rheumatology

Many people are under the impression that Arthritis is something that happens to you as you get older; a few achy bones in the winter months, knees cracking, stiff fingers… Yet there are approximately 15000 children and young people living with some form of Arthritis in the UK alone. These conditions don’t just cause a few aches and pains; they can be seriously debilitating, causing joint damage, pain and stiffness, fatigue, anaemia, nausea, fevers and in some cases systemic symptoms, such as rash and internal organ involvement. In short, they make a child or adolescent feel extremely unwell. And this isn’t something that is easily treatable either. It would be lovely to think that a simple course of tablets would make it all go away, but most of the time these youngsters have to face the realisation that they will probably be dealing with their condition for the rest of their lives.

There are some lucky ones that grow out of their Arthritis and into remission; for a while I thought I was one of them. I was diagnosed with Reactive Arthritis at the age of 3, but by the age of 8 was back to being symptom free and leading an active childhood. Then at the age of 14 I was struck down again. Symptoms came on quickly, like a bulldozer knocking all youthful life and energy out of me. Not only was I in excruciating, body-wide pain that meant my parents couldn’t even comfort me with hugs, I was too weak to climb the stairs and eventually to lift the duvet off myself, never mind get out of bed. And that’s where I spent most of my time, sleeping; yet never able to shift the feeling of sheer exhaustion. Food stopped being a priority. I was constantly nauseous and if I did try and eat was usually sick, so I would sleep through mealtimes too.

Getting a diagnosis was hard. Even doctors didn’t seem to recognise that it was possible to get Arthritis at such a young age. If we’d had a pound for every time we heard the term ‘growing pains’ we’d have been able to treat ourselves to a nice holiday! At that age you still have complete trust in the adults around you; if professionals tell you that it’s growing pains, then they must be right. I started to wonder if I was doing something wrong, if it was all in my head or I was making a big deal out of nothing. Again and again they asked if I was happy at school, which I loved. Depression was mentioned a lot and I felt mortified. Surely, that must mean they did think it was all in my head! But it didn’t make sense; yes, I felt fed up but wouldn’t anybody be fed up with constant pain and fatigue? A couple of months earlier I’d been a happy, active teenager loving every minute of my life. However, convincing them of that was hard work.

I was eventually referred to a Rheumatologist – an adult one initially – and I remember sitting in the waiting room full of older people with wheelchairs and twisted finger joints, wondering if that was going to happen to me. Once they realised something really was wrong, I was referred to Manchester Children’s Hospital. It took five months of hospital admissions and many, many tests, but eventually I was diagnosed with Dermatomyositis; five years later, at the age of 19, this was changed to Still’s Disease (Systemic Juvenile Idiopathic Arthritis). My family and I were relieved to have a diagnosis but scared as to what that meant for my future. I didn’t fully understand the implications at that time. I thought it would be a case of treating it and making it go away for good so I could get on with my life. Nobody really prepared me for the fact that I would probably have to deal with it for the rest of my life.

I missed a whole year of school (a topic I’d like to cover in another post), but saw my friends from time to time. I talked to them about my symptoms and the medications but the word Arthritis was never mentioned. I wasn’t ashamed exactly, but I was embarrassed. I knew that people would associate it with an old persons disease, didn’t want them to see me differently to the person I’d been before.

Over the next few years I started college and met new people. I was still extremely poorly, both from the illness and from the high dose of Methotrexate I was taking. Most of the time I could barely walk because my knees were as big as footballs; I was having them drained and injected with cortisone every 4-6 weeks and spent every few weeks in hospital receiving infusions of Immunoglobulin. Yet somehow I managed to keep my illness under wraps and put on a front to the world; I didn’t talk about my illness to anybody, it seemed easier to keep it to myself and carry on somehow. I often struggled in silence, but it must have seemed better than the alternative, to not being accepted for who I was. I guess I was just being your typical, image-conscious teenager.  But even now, I don’t know how I managed.

Eventually, I started to realise that I wasn’t doing myself any favours in hiding my illness from the people around me. I would often have to refuse fun activities or cancel things with friends at the last minute and I wanted to explain why, so that I didn’t just look like a lousy friend. Plus I was spending so much time in hospital, often quite seriously ill, that it was getting harder to hide! Not that I started shouting it from the rooftops, but I did at least start to confide in the few people that I trusted, a little bit at a time.

Still, even then there was one word that I avoided using – Arthritis.

When asked about my illness I would describe it as an auto-immune condition; that my own immune system was attacking my body – my organs and my joints too, hence the surgical scars. Sometimes I’d draw a comparison with Lupus, as a lot of people had heard of that but didn’t all associate it with Arthritis. It was all the truth, but I was aware that I was doing everything I could to avoid admitting to Arthritis. Most of the time, I downplayed it as much as possible. I didn’t want to be the sick or disabled one, because I have been disabled ever since that bulldozer came at the age of 14. Yet it’s only very recently, in my late twenties, that I have been more honest with people as to the reality of my illness and accepted it myself. I always dealt with it well, but never really accepted it.

I tried to have as ‘normal’ a teenage life as possible – I went to college and university, I had jobs when I was well enough, went clubbing with friends and had boyfriends (issues I’d like to post about in their own right). It was difficult at times, I won’t lie. My life has revolved around hospital appointments and admissions, blood tests, medication and so on. I always felt ten steps behind everyone else and much younger and less independent than a lot of my peers, plus of course I did have my physical limitations, which at times left me feeling frustrated and isolated. But I tried not to dwell on things too much and learnt to adapt, pacing myself, getting plenty of rest, planning activities to within an inch of my life and accepting that I needed help sometimes. It’s a huge learning curve and takes time; I’m still having to adapt and readapt even now, as my Still’s Disease loves to throw new symptoms and challenges my way every now and again.

I turned thirty this year and although my illness is proving particularly difficult to treat and I’m going through a rough time, I am happy with my life and with who I am. I have my low moments, but I think that’s only natural. Sometimes, I do look back and feel sad that so much of my younger life was spent in hospital, going through some atrocious things and of course I often wonder where my life would have taken me if I hadn’t become ill at 14. But I know I could drive myself mad thinking that way; we can’t change the hand life deals us, we just have to make the most of it. Besides, I wouldn’t be the person I am today if I hadn’t been through all that I had.

I also consider myself very lucky to have been diagnosed when I was. I was one of the last in the era when only the oldschool drugs were available; when it was likely that having Arthritis as an adolescent would leave you with multiple deformities and joint replacements before adulthood. Then suddenly, along came the biologic drugs and changed all that, meaning it is now much easier to prevent joint (and organ) damage before it occurs. There are more and more drugs being developed all time and with the help of places like Arthritis Research UK’s new Adolescent Rheumatology Centre, there will be more research into how these can benefit younger patients sooner, as well as into the long term consequences of having the disease at such a young age.

All of which will hopefully help Rheumatologists get onto the successful treatment of Juvenile Arthritises faster than ever and hopefully lessen the impact these diseases have on our lives in the long term.

And who knows, maybe one day we’ll even find a cure :)

Wishing you all well,

Laura

Ps. Please return for my second post on Adolescent Arthritis, ‘Family and Friendships’.

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Links:

The Arthritis Research Centre for Adolescent Rheumatology

New Research Hope For Teenagers With Arthritis (Press Release)

Growing Up With Arthritis: Stories From Young People With Arthritis

Arthritis Research UK held their grand opening of a new centre yesterday; the world’s first centre dedicated to adolescent Rheumatology. Working with doctors and patients at Great Ormond Street Hospital, University College London and University College London Hospitals, the centre aims to fund research into how and why arthritis affects young people.

Taken from the website:

What will the Centre do?

Up till now adolescents with JIA and other rheumatic diseases have been a forgotten group when it comes to care and research into their conditions. There are a lot of unanswered questions about how and why arthritis affects teenagers. 

• Clinical trials have overlooked teenagers, so treatments used to treat young people are based on research carried out on adults and children.

• The lack of specialist adolescent rheumatologists means that young people are often treated by people who are not experts in their condition.

• We do not know enough about the long term effects of having JIA as a teenager.

• We do not know why arthritis can be more severe or why some forms are more likely to occur in adolescence 
 
By focusing attention on understanding why and how arthritis is different in adolescence, and what happens as young people with arthritis enter adult life, we hope that the Centre will dramatically improve treatment and care for young people.

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This is a huge step forward in the funding of research and treatment of Juvenile Arthritises, including Still’s Disease (Systemic Juvenile Idiopathic Arthritis) and hopefully will help more people recognise that Arthritis isn’t just a disease of the elderly but affects younger people too. Plus adolescents are often caught between both worlds – that of the Children’s Hospital and the Adult, which can be frustrating and isolating; not to mention that the transition between the two can be a scary experience.

A middle ground, specifically for adolescents, is something that we longed for during my own teenage years, when I was often placed on wards with much younger children, or in some situations – such as emergency or surgical – with mostly old people. This doesn’t help project an image of arthritis not being an old person’s disease.

And there are so many other issues that you face as a young person with Arthritis, that they hope to be able to manage better through this project. To mark the launch of the new centre, Arthritis Research UK contacted me to ask if I could look back on my own experiences as a teenager with Arthritis and post about them here; and so over the following week, my blog will be taking a look at a few of those issues.

Here’s to the new centre and all the progress it brings,

L

I received a letter from Professor Moots at Aintree this morning, basically running through everything that we discussed at my appointment on the 14th. He mentions that it is worth trying the Humira in the short term and that Rituximab should also be considered a legitimate option because of the possibility of resetting the immune system. He also states that a new drug called Tofacitinib may be available to me within the next year or so – this has a totally different mechanism to any that I’ve tried and is also an oral drug.

But once again the phrase ‘long shot’ is used.

I obviously know there are no guarentees with trying new drugs but I always tend to be quite hopeful when I do. Maybe I’m setting myself up for disappointment? It feels a bit disheartening to see on paper that the chance of something working is only slight; moreso than hearing it in discussion. I felt so geared up after that appointment and now I feel a bit deflated.

The fact that I’m feeling exhausted after the weekend and generally a bit low probably doesn’t help. I tried to do a little bit of Christmas shopping yesterday but it didn’t quite work out how I wanted to, meaning I not only wore myself out but also got frustrated with myself and the Still’s for getting in the way of how I wanted things to go. When things like that happen, I find myself much more inclined to take the drastic measure of Stem Cell Therapy. The temptation of a ‘normal’ life, where I can go out and do something as simple as shopping without even thinking, suddenly over rides some of my other concerns. Obviously, there’s a lot more to it than wanting to go shopping but you get the picture. I’m being offered a potential opportunity to get some sort of life back, even if I have to make sacrifices to get there.

Another thing that doesn’t help right now is the waiting. I am all for trying new treatments, but it is a long process. It is over 9 weeks since I was in hospital and they told me that I should get to start Humira in about 3 – 4 weeks and I still haven’t heard anything. Since then I have been relying on high dose Prednisolone and Cyclosporin to keep my disease activity to a bearable level, which while I am grateful that it allows me to function, is not ideal. I have had a constant run of trying different drugs for over three years now and I’m not sure how much longer I want to do it. Part of me thinks it is a small price to pay really, compared to facing chemo, but I can’t help that other part of me that is just plain fed up with the whole process.

So these are the things that are going through my mind as I get closer to my appointment with the Bone Marrow transplant doctors on Wednesday. I still haven’t made any proper notes or lists of questions (a little bit of denial?) but I feel a little bit easier about it – perhaps because it does at least feel like there are other options to try first if I wanted to, even if they are long shots. I think I probably will agree to the Stem Cell therapy at some point in the future, but the longer we can hold off the better.

For now, I think I need to slow down a bit as the Still’s seems to be lurking closer to the surface than I thought.

L

Even though it’s not something we celebrate here in the UK, I’ve always liked the idea of Thanksgiving. I’d love to start our own small tradition; not in a commercialised way, but as an opportunity to take a few moments to think about what we are grateful for, to reflect upon how lucky we actually are and marking it by cooking a special meal, lighting candles and swapping notes of thanks.

Today I’m not going to complain about my ills. Instead, I’m going to share a few of the things I am grateful for.

  • Waking up every morning; even when I’m in pain I am grateful that I can still listen to the birds sing and see the beautiful sky, to be able to go outside and feel sunshine or rain on my skin. I’m grateful that I am alive.
  • For the people in my life; my friends and family that love and support me. And my fiance, who is my best friend and soul mate and who I couldn’t bear to be without. That he has taken on this illness alongside me, lightening the load.
  • My healthcare; for the doctors that look after me and the drugs that have come so far over the past ten years, meaning that my Still’s hasn’t progressed in quite the same way it would have previously. For the hope that research into future  drugs brings.
  • For every day I am able to get out of bed and function to some extent, even just to manage the smallest of tasks. For the fact that my pain is mostly bearable right now.
  • That I have a roof over my head and food on the table and do not live in fear, unlike many people in the world.
  • Despite everything, I am thankful that I am who I am.

I’m sure I’ll be able to add more things as they come to me… but what one thing are you thankful for today?

And do you have any personal Thanksgiving traditions?

L

I haven’t really been posting much about how I am physically, the reason being that things have kind of reached an even keel and there is nothing new to say. I am still in pain every day, particularly with my hips, knees and left elbow, but mainly at a functionable level; I have the Still’s rash daily and almost constant fevers, chills and sweats. I also still have the rib/chest pain that I had prior to my last hospital admission and get quite breathless at times, but whether it is still down to the Pleural Effusion or my Spleen, I don’t know. I’ve also been getting a lot of bad mouth sores, ulceration and sore, gritty eyes for 3-4 months now.

I had my last infusion of Infliximab in August, which seems like a lifetime ago. No Biologics since, but I am waiting to start Humira, which is taking longer than expected. Then of course there is the appointment with the Bone Marrow transplant doctors next week. I’m surprised that I’m not worse off than I actually am and keep reminding myself to be grateful and make the most of what I can do. I know this reprieve is mostly down to the hefty dose of Prednisolone, but I think my ‘spoon’ management plays a part too:

For the most part of this year I have been pretty much housebound; my world is restricted to within these four walls and every other day a trip to the shop with someone or a walk to the postbox down the road, which is about as far as I feel safe walking on my own. Even in the house I’ve had the odd funny turn and found myself on the floor, or have needed to lie down to catch my breath and concentrate on slowing my heart rate down; simply because I’ve stood up for too long or bent over to pick something up (an action my body doesn’t seem to like at the moment).  I have plenty of things to keep me occupied indoors; at least I can do things, unlike earlier in the year when I couldn’t even get downstairs and relied a lot on carers. And I try and stay as mobile as possible within the house, making sure I walk about, get fresh air in the garden and limber up with my physio exercises…

But that doesn’t mean I don’t get fed up. It’d be kinda crazy if I didn’t. I mean it’s not normal for a thirty year old to spend so much time on her own and for such a prolonged length of time. I’m lucky that we live as an extended family, so that we do have other people around us to talk to every day. I look forward to them and my fiance coming home from work and to us spending the weekends together, but as the week goes on I get grouchier and grouchier.

A while ago, we decided to make a special effort to spend weekends out of the house. We’d go for drives and simple lunches, often just sat in the car with me wrapped in blankets, admiring a nice view somewhere. Recently though, we’ve been a bit more adventurous – we had the wedding venues to view and then this weekend we traveled down to Cheltenham to visit some friends.  We knew these things would take it out of me, but then I would at least be able to rest afterwards and hopefully there would be no long term effects if I paced myself properly. Sometimes, you just have to take the risk and find that it’s well worth taking, even if you do suffer for it a bit. Still, I was a little bit worried about three days away from home.

We traveled down by car on Saturday morning and it took about three and a half hours. It doesn’t sound like much, but if you have any experience of Rheum-type illness you’ll know that it is hard sitting in one position for so long, especially with grumbly knees and hips that feel like they’ve clicked out of place. Ironically, we stopped at the services for lunch and decided to take the lift – wise choice when you struggle with stairs right? Wrong! We only got stuck in the bloody thing for nearly half an hour, meaning I had to stand for longer than I’d ideally want to (standing is often harder than walking). By the time we were out, my hips and knees were shocking and I’d have been better off climbing the stairs. (Note: The lift did look to be made of wood, so maybe we should have realised using it wasn’t the best idea).

Once there, we met up with said friends and some others and I then had the pleasure of having to disrupt their plans (which involved walking everywhere and going to the next town over until 4am in the morning). I was met with blank faces when I tried to explain that not being able to walk far didn’t mean maybe a few miles, but to the end of the road, or that I wouldn’t be able to stay out until 4am unless they found me a cosy corner to fall asleep in. They made it clear that the local town was quite limited, but although I didn’t want to stop them from having a good time, I knew it would cost a small fortune for me to get a taxi back from the other place.

To them it must have seemed that I was finding a problem in everything; but to us, highlighting potential problems and coming up with a solution beforehand has become a way of life, to avoid any major fallbacks and allow us to get on with things.

But I hate it. I hate the fact that I can’t just go along with things, that I have to plan for every eventuality in advance and that it disrupts other people’s plans too. I hate the awkwardness of having to do so, without really being able to explain why to people that I don’t know well enough. I’m sure they think I’m just a whiny, boring party pooper. I’m not but the Still’s makes me feel that way sometimes and I worry that one day it will become permanent.

In the end, (thanks to my PHD in Rheum Planning), we managed to have a lovely evening that ticked all boxes for everyone. We started off in town, near our hotel, so that I could get back easily once I felt I’d done enough. Had an amazing curry and then went to a nice pub, where I could sit down but which also had a dance floor for the others. I did wish that I felt well enough to have a drink and a boogie, but reminded myself how nice it was just to be out for a change. By about 11pm I was ready to call it a night and so was one of the other girls; and as she drove me back to the hotel, the others (my fiance included) were just in time to get the bus to where they had originally wanted to go – so smiles all round!

Well nearly, I’d only been back at the hotel an hour or so when the familiar pains crept in and the shaking chills started, despite me burning up. All sure signs that I’d overdone things, maybe a little too much this time. I tried to get some sleep, while topping myself up with plenty of iced water and regular Oramorph – there wasn’t much more I could do. By the time morning came, I was numbed enough to be able to get out of bed and determined not to spoil the weekend; we did have to change plans a little but still had a nice day at our friend’s house, with me resting up on the sofa. They cooked us a fantastic Sunday dinner and we had a marathon X Factor session, catching up on the night before and then watching the results show. A perfect spoonie day really.

I seemed a bit better the next morning, made it down to breakfast and even managed to be ready to leave the hotel at checking out time. I agreed to a trip into town as it seemed such a waste to travel somewhere and not even see the place properly. We literally walked the length of the High street, stopped for some lunch and then walked back, but it was enough to soak up some of the Christmas atmosphere. Unfortunately, it was enough to set the pain and fevers off again too but I’d known it would do. Like I said, sometimes you just have to, even knowing there will be a price to pay for a taste of normality. There’s only so much mollycoddling and protecting yourself from the world that we can handle.

That’s not to say we should go mad and run ourselves into the ground, determined to plough on no matter what. That doesn’t get you anywhere, except maybe the hospital – trust me, I’ve tried it enough times. It all boils down to pacing yourself. If you know an event or activity is going to take it out of you, don’t immediately be put off doing it; instead try and prepare for it by getting plenty of rest beforehand and making time to rest and recover afterwards. I literally set aside days that I can do nothing if needs be. It can also help to increase medication for a short while (with the doctor’s permission obviously!) – a few days extra Prednisolone or Pain medication may get you through a longer activity such as a holiday.

And most of the time, these things are worth the price we have to pay. There are different kinds of benefits from having fun with friends and, to a point, keeping active too. As long as it doesn’t lead straight to flaredom, I don’t mind a little extra pain now and again, if it gives me a boost and keeps me happy. I mean, I’m just about recovered from the weekend now physically, but the sense of wellbeing will last a lot longer.

Does anyone else have any tips on how they manage ‘Paying the Price’ days and activities? What’s your favourite way to recover?

L

Reading Angie and Me, a story about a young girl being treated for Juvenile Rheumatoid Arthritis in hospital, I found myself thinking back to all the time I spent in hospital growing up. I would spend weeks at a time on the same ward  (in the same room even) at Booth Hall in Manchester; often with the same kids. It really was my second home.

I can remember my first night there as clear as if it were yesterday. It wasn’t my first stay in hospital but it was the first time I had to stay without my parents and I was terrified. I was 14 and not only very poorly but totally self-conscious too. The individual rooms were walled with curtained windows, but even though they were closed, I wouldn’t change into pyjamas and slept in my clothes instead. I say slept but I didn’t really sleep at all; instead I lay listening to my Walkman, while the nurses came in every hour to check my obs. I had a TV but didn’t know what the rules were and was scared I’d get in trouble for disturbing the rest of the ward if I switched it on. I was desperate for the toilet but this meant a painful walk down the unfamiliar corridor, so instead I held it in. I wouldn’t even press the call button for pain relief, despite being in agony. It seemed to take an eternity for the dark sky outside to pale into morning. Needless to say, there were plenty of tears.

The next day I was eating lunch in the little dining room they had on the ward. Being a children’s hospital, the furniture was all child-sized, but I sat there on a tiny wooden chair with my knees under my chin,  surrounded by snot-tastic five and six year olds and feeling totally miserable. Then a boy of about nine or ten came in with his empty plate and laughed at me. He told me that the older kids were allowed to take their food into their rooms and, when I refused, he carried my tray down the hall to my room, climbed onto a chair to switch the TV on and sat with me, telling jokes in an attempt to cheer me up, while I finished eating.

The boy’s name was James Holland and he was actually twelve and a half; he just looked a lot younger because he had Cystic Fibrosis. We quickly became best friends while in hospital and there was hardly an admission over the next five years that James wasn’t on the ward too. The hospital soon felt like a second home and we actually had some fun times and got into mischief along the way. James would race me round the corridors in a wheelchair or we’d hijack one of the cleaners electric buffers to ride on – get two and you could send them for a race. Another favourite was filling the doctors’ rubber gloves (boxed outside each room) with water and tying them like water balloons then lobbing them out of the window into the car park below to see who could reach the furthest.

In fact, I think we started to cause so much mischief that the playworkers realised they needed to provide some extra activities to keep us occupied and out of trouble; so when we weren’t down at the hydrotherapy pool or schoolroom together or with our medical teams, we were soon baking cornflake cakes, learning how to make beaded friendship bracelets, watching 15 rated films smuggled in by one of the nurses or playing on the old SEGA one of them had donated.  We were pretty inseparable; a double act, and I started to miss him when I wasn’t in hospital – he understood what it was like to be sick and at the same time, he made me feel normal.

James saw how much pain I was in and knew my limitations; he could soon help me with things before I even knew I couldn’t do them. He didn’t laugh at my swollen, deformed joints or find it weird that I couldn’t chop up my own food. At the same time, I saw how painful it was to endure chest physio four times plus a day and would try and distract him when he was hooked up to his nebulizers during a bad flare up, filled with panic because he couldn’t breathe. Especially in the middle of the night, when things felt scariest for him with no family around.

It all made the frequent hospital stays much more bearable.

Then one day I needed to be admitted urgently, but at 19 was deemed to old for the Children’s hospital and transferred to nearby General hospital instead.  I eventually tried sending letters to James at Booth Hall (as I had done before) but never heard back and never saw him again. Years later, I realised just how poorly he had been and why he was always there at the same time as me – he was rarely out of hospital in those later years. Yet he never let on or complained.

I’ve always wondered if his CF got too much, if the worst did happen and he died. I remember how small and fragile he was; how it was suddenly me pushing him in the wheelchair and how his lips would turn blue just from talking too much… unfortunately, there was never any way of finding out. But just like Jenna in the book, I’ll never forget the friendship we had; in fact, I still have one of the bracelets he made for me. And the support and example he gave me, even though we were only children at the time, can still get me through a tough day.

L

I am always interested in reading books that address Still’s Disease and Rheumatoid Arthritis and was recently recommended Angie and Me by fellow blogger Kirsten. It is only a short book and very easy to read in one sitting, but a good one too, especially if you have experiences of staying in hospital as a child.

The story follows Jenna, a twelve year old who is diagnosed with Juvenile Rheumatoid Arthritis and spends a month or so in hospital to get things under control. It doesn’t go into the Arthritis side of things in great detail but there are some interesting insights and certain issues that I found myself identifying with.

Mainly, it shows how Jenna handles the adjustments she needs to make and how the people around her handle things too; family, school friends and the new friends that she makes in the hospital itself. It’s actually quite thought provoking, even if simple.

There is a sweet storyline running throughout and I even felt a little tearful at the end. My only criticism is that I wanted it to go on longer, I wanted to know more about Jenna and how she got on after she left hospital.

I had to order my copy from the US but it still only cost a few pounds. Well worth a read and a good choice if trying to explain arthritis to an older child too.

Happy reading!

L

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