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20/Sep/2022

Most people think that arthritis only affects older people, but children can get it too. It’s estimated that between 1 in 800 and 1 in 1,000 children in Australia have arthritis.

What is juvenile idiopathic arthritis (JIA)?

JIA is a group of inflammatory conditions that cause joint pain and swelling in children and teens under 16.

What causes JIA?

We don’t really know what causes JIA. That’s what ‘idiopathic’ means, ‘from an unknown cause’.

But we do know it occurs due to a malfunctioning immune system.

The job of your immune system is to look out for and attack foreign bodies – like bacteria and viruses – that can make you sick. However, in the case of JIA, the immune system mistakenly targets healthy tissue in and around the joints, causing ongoing inflammation and pain. We don’t know why this happens, but scientists believe that a complex mix of genes and environmental factors is involved.

Types of JIA

There are several types of JIA, each with distinct features.

Oligoarthritis JIA

This is the most common type of JIA. It’s also called oligoarticular or pauciarticular JIA. Both ‘oligo’ and ‘pauci’ mean not many or few. Less than five joints are typically affected, most commonly one or both knees. Children with oligoarthritis may also develop inflammation of the eye, called uveitis.

Polyarthritis JIA

Polyarthritis (or polyarticular) JIA affects five or more joints. ‘Poly’ means many. It often affects the joints in the fingers, toes, wrists, ankles, hips, knees, neck and jaw.

There are two types of polyarthritis JIA, based on whether rheumatoid factor (proteins produced by the immune system) are found in the blood. They are polyarthritis JIA (rheumatoid factor positive) and polyarthritis JIA (rheumatoid factor negative).

Enthesitis-related JIA

Entheses are the tissues that attach tendons and ligaments to the bone. Enthesitis-related JIA causes inflammation and pain in the entheses (enthesitis) and joints (arthritis). The most common locations for enthesitis are the knees, heels, and bottoms of the feet. Arthritis is generally in the hips, knees, ankles, feet, and spine.

Psoriatic JIA

Children with psoriatic arthritis have inflammatory arthritis of the joints and the skin condition psoriasis. It often affects the fingers and toes, but other joints can be affected. It can also cause pitted fingernails and swollen fingers or toes.

Systemic JIA

Systemic JIA can affect many areas of the body, not just the joints. It usually starts with fever and rash that come and go over a period of weeks. It’s the least common type of JIA.

Undifferentiated JIA

This is where the condition doesn’t fit any of the above types of JIA.

What are the signs that my child may have JIA?

The signs or symptoms of JIA vary depending on the type of arthritis a child has. Some of the more common symptoms include:

  • Pain, swelling and stiffness in one or more joints
  • The skin over the affected joints may be red or warm
  • Mental and physical tiredness (fatigue).

Less common symptoms include:

  • Fever
  • Rash
  • Feeling generally unwell
  • Eye inflammation (uveitis).

The symptoms of JIA vary from child to child and are likely to change as they get older.

At times, symptoms can become more intense; this is a flare. Flares can be unpredictable and often seem to come out of nowhere.

There may also be times when your child experiences a remission – where their symptoms go away for a time.

What is uveitis?

Uveitis is inflammation of parts of the eye. It’s also the result of a malfunctioning immune system.

The most common type of uveitis has no symptoms (sometimes called silent uveitis). This means that it doesn’t hurt, and you won’t be able to tell if your child has uveitis just by looking at their eyes. Some children do have symptoms such as blurred vision, light sensitivity, and in rare cases, eye redness and pain.

If uveitis isn’t treated, it can cause permanent vision loss. This means that all children with JIA need regular check-ups with an ophthalmologist (specialist eye doctor) to check for uveitis and start treatment if needed.

How is JIA diagnosed?

JIA can be challenging to diagnose because the symptoms differ between children, and many symptoms are similar to those experienced with other illnesses.

There isn’t one single test that can be used to diagnose JIA, and your doctor will usually use a combination of tests to confirm your child’s diagnosis, including:

  • a physical examination to assess joint tenderness, flexibility, and stiffness
  • blood tests to check for inflammation associated with JIA, which can also help to work out which type of JIA your child has
  • scans such as x-ray and MRI (magnetic resonance imaging) to check for joint inflammation and damage
  • an eye examination.

If you visit your family doctor (GP) and your child has symptoms that suggest it might be JIA, they’ll usually order some of these tests and refer you to a doctor who specialises in juvenile idiopathic arthritis, called a paediatric rheumatologist. Seeing a rheumatologist as soon as possible is essential to ensure your child gets the best outcomes.

How is JIA treated?

While there’s no cure for JIA, there are many treatments to help manage the condition and its symptoms so your child can continue to lead a healthy and active life. Because every child’s experience of JIA is different, treatment will be tailored to best meet your child’s needs.

Finding the right combination of treatments may take time and is likely to change as the JIA symptoms change or your child grows.

For most children and young people, treatment will include exercises to keep joints moving and muscles strong, medicines to reduce inflammation, splints to support joints, and pain management strategies.

Medicines

Most children with JIA – regardless of the type – will need to take some form of medicine at some time. The medicines that your rheumatologist prescribes for your child will depend on their symptoms, including how much pain and inflammation they have.

There are many different types of medicines that work in different ways. The main types of medicines used to treat JIA and help manage its symptoms include:

  • Analgesics (or pain relievers) provide temporary pain relief. They can range in strength from mild to very strong. You can buy many of them over the counter at your pharmacy or supermarket. However, stronger medicines, including those containing codeine, require a prescription.
  • Creams and ointments (also called topical analgesics and anti-inflammatories) applied to the skin over a painful joint can provide temporary pain relief.
  • Non-steroidal anti-inflammatories (NSAIDs) also provide temporary pain relief, specifically pain associated with inflammation. You can buy some over-the-counter, but stronger NSAIDs require a prescription.
  • Corticosteroids act quickly to control or reduce inflammation, pain and stiffness. They can be taken in tablet form, or may be given as an injection into a joint, or from a drip into a vein.
  • Disease-modifying anti-rheumatic drugs (DMARDs) control your child’s overactive immune system. They help relieve pain and inflammation and reduce or prevent joint damage.
  • Biological disease-modifying medicines (bDMARDs, or biologics and biosimilars.) also work to control the immune system. However, unlike other disease-modifying drugs, biologics and biosimilars target the specific cells and proteins that cause inflammation and tissue damage rather than suppressing your entire immune system.
  • Eye drops to treat eye inflammation (uveitis).

What can we do to control symptoms?

As well as taking any medicines as prescribed, things you and your child can do to manage JIA include:

  • Learning about JIA. Understanding the condition and how it affects your child means you can make informed decisions about their healthcare and actively manage it.
  • Following the treatment plan that your health professionals have developed. That means taking medicines as prescribed, doing the exercises the physiotherapist and/or occupational therapist have provided, and letting your doctor know of any changes to your child’s symptoms and how they’re feeling. All these things give your child a better chance of managing their JIA well and reducing the risk of long-term problems.
  • Staying active. Regular exercise is the key to maintaining muscle strength, joint flexibility and managing pain. A physiotherapist or exercise physiologist can help design an individual program for your child.
  • Learning ways to manage pain. There are many ways your child can manage pain from heat and cold treatments, distraction, massage and medicine. Try different techniques until you find the things that work best for your child.
  • Eating a healthy, balanced diet. While no diet can cure JIA, a healthy diet is the best for good health, especially for growing children. Keeping to a healthy weight is also important as extra weight strains your child’s joints, especially load-bearing joints such as hips, knees and ankles.
  • Protecting the joints. Aids, equipment, and gadgets can make activities easier for your child. They include an ergonomic mouse and keyboard for your child’s computer, a supportive chair or back support cushion, and foam rubber to make pencils, pens, brushes, and cutlery handles easier to grip. An occupational therapist (OT) can advise you on available equipment and techniques to reduce strain on joints from everyday school activities.
  • Using splints. Splints are commonly used as a treatment for JIA, particularly for wrists and feet. They’re used to rest or support sore or inflamed joints, stretch out a joint, and help make some activities easier.
  • Staying at school. This is essential for your child’s health and wellbeing, as well as their education and socialisation. Talk with your doctor, allied health professionals and teachers about ways to help your child stay at school and keep up with school.

Contact our free national Help Line

Call our nurses if you have questions about managing your painmusculoskeletal condition, treatment options, mental health issues, COVID-19, telehealth, or accessing services. They’re available weekdays between 9am-5pm on 1800 263 265; email (helpline@msk.org.au) or via Messenger.

MSK Kids

Our free MSK Kids program provides a range of programs and services along with evidence-based information and resources for children living with juvenile arthritis (JIA) and other musculoskeletal conditions. Resources are available for the child, family and school. Find out more about MSK Kids.

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23/Mar/2022

Written by Buffy Squires, with input from Mikayla O’Neill

Note: the names of the completion certificates vary across the country, e.g., VCE in Victoria and HSC in NSW. In this section, we refer to them all collectively as SSCE.

Wow! You’re heading into your final years of secondary school! Congratulations! It’s a really exciting time for you.

But perhaps you’ve heard from friends and others who’ve already gone through it, that it’s a lot of hard work. This may be making you a bit worried about how your body’s going to hold up. It’s ok to feel like this, but we’ve got plenty of tips and resources so that you can deal with the challenges and get on with your studies. And in doing so you can make your final years of secondary school as successful and enjoyable as possible.

Keep in mind that there are lots of different options for completing your SSCE. You may choose to do it over 3 years rather than 2 or do less subjects or an ungraded SSCE. It’s a matter of talking with your parents and your school and working out what works best for you.

All students should have the opportunity to sit their exams on as level a playing field as possible. This means that your arthritis or musculoskeletal condition shouldn’t put you at a disadvantage to your peers.

So, as exam time approaches, it’s important to remember that you may be eligible for special consideration. This could include extra time to do your exam, take breaks, use a keyboard instead of handwriting, access your medication, heat and cold packs and more. The process differs depending which state or territory you live in so check out the Curriculum and Assessment Authority links below for more information. Your school will help you with this, and they’ll lodge the application on your behalf.

Tip 1 – Start early

Special exam arrangements aren’t just for your final exams. If you live with a chronic condition (like arthritis), you can apply to have them in place right through your schooling to cover things like NAPLAN. But many students first apply for special exam arrangements as they approach their final school years.

Some students will be doing a final year subject in year 11, so if that’s you, you’ll want to start thinking about the process of applying for special consideration at the end of year 10. Speak with your rheumatologist about it, as they’ll have to write a letter supporting your need for special consideration. It might also be a good time to make an appointment with the hospital’s occupational therapist. They can do a writing assessment to see if you’d benefit from a laptop/keyboard and recommend other aids to help you. In the public hospital system, you might need to wait a few months, so again, start the process early!

Speak with the head of senior school or find out who is responsible for managing special exam arrangements in your school. Make sure they’re aware of your limitations and ask them for a list of anything they need you to provide.

Tip 2 – Have a support system in place

Make sure you have a support system in place at school. If you feel comfortable in doing so, it’s a great idea to talk openly with your teachers and the head of senior school so that they know your needs and limitations and are able to offer help around test or exam time. You may also want to have one particular teacher who’s your main “point of contact” so that, if you’re unwell or need to take time off school, you can deal with any issues through them.

After significant appointments it may be helpful to take into school a doctor’s letter or organise a quick meeting with teachers to keep them in the loop. You may also find that by keeping your teachers updated regularly, they’re better able to understand your condition. Then, when exam time comes around, you’ve already got that support system in place which makes it easier to organise the help you may need.

Tip 3 – Manage stress

Yes, it’s easier said than done, but if you put some plans in place and find some strategies that work for you, year 12 really doesn’t have to be that stressful. In a few years you’ll look back and wonder what all the fuss was about! Check out our A-Z pain guide (link https://msk.org.au/pain-guide/) and the pain section of our website (link https://msk.org.au/kids-pain) for tips on dealing with pain. Find things you enjoy that make you feel great. It might be something active like a walk with a friend or a game of soccer, or perhaps you enjoy meditation, music, gaming or colouring in. Whatever it is, have some options you know work for you, and use them as soon as you feel the stress starting to build.

Tip 4 – Check, and check again

Once you’ve got the paperwork in place, check with your school to see if there’s anything else they need from you. If you haven’t had confirmation to say your special consideration has been approved, don’t be afraid to ask them to follow it up. The creaky gate gets the oil!

Things may change as you get closer to exams. Perhaps you have a flare-up and find that you can’t sit for long periods. Keep the lines of communication open with your contact person at school and make sure they know what’s going on. They can always make later applications for amendments to your plan – for example, a stand-up/sit-down desk to help manage back pain.

Got any tips you’d like to share? We’d love to hear from you. Send them to buffy@msk.org.au

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28/Oct/2021

Photo by AUSVEG

Caitlin, a fifth-generation farmer from the northwest coast of Tasmania and Australian Apprentice of the Year 2020, shares her story about living with arthritis.

I was diagnosed with arthritis when I was 12, turning 13, and in grade 7.

I remember my first attack very well. We were on the Spirit of Tasmania heading over to Werribee for the 2011 Interschool Nationals (Equestrian) and on the boat I had a really sore hip. By the following night, the pain had become unbearable, so mum took me to the hospital. The staff took x-rays but couldn’t find what was causing my pain.

I was then transferred to the Royal Children’s Hospital, where I spent the next three days. After a series of ultrasounds and an MRI, they found a heap of fluid on my hip and diagnosed post-viral arthritis. Even with this diagnosis, I went on to compete and hobble around on crutches at Nationals!

When I got home to Tasmania, I went to my GP and was referred to a rheumatologist. It was then I was diagnosed with severe idiopathic rheumatoid arthritis. Then the journey began…???

Has your condition or living with pain impacted your social life, work, friends etc?

It had a huge impact on the rest of my high school years. I took prednisone daily for two or so years, which made me extremely puffy in the face. The people who knew what was going on were kind, but there were also some unkind people. It affected my confidence, I became depressed, moody and I didn’t even want to ride my ponies for a while.

Also, because I usually competed every weekend and rode a lot, I never really felt that I belonged with a particular group at school. And so, towards the end of school, I was quite happy to do homework in the art rooms at recess and lunch. I had some friends, but none who understood what it was like for me, or my lifestyle with the horses and farm, except for my best friend, who lived an hour away.

Since grade 12, life has been on the up and up. I’ve found my ‘people’ by developing greater friendships through horses, joining Rural Youth and getting involved with local agricultural networks where I fit in with like-minded people. Sometimes I’m exhausted and not up to some activities, but I know how to balance my life to keep myself healthy (most of the time! ?) and to be honest with how I’m feeling and when I need to take a break.

Work-wise, working for myself and my family is very handy as I can be more flexible around workload and how I do things. My family is super supportive and will help me in any way they can if I get sick, have an attack or need to go to appointments.

What’s life like living with arthritis?

Every day is different! When I was younger and trialling a lot of different medications, it was a rollercoaster to say the least! I would be nauseous all the time if I was on methotrexate, and tired to the point where I would fall asleep not long after getting home from school. Touch wood, it seems to be somewhat under control now.

I’ve found Actemra (tocilizumab) to be the best medication for me so far. I have an infusion at the hospital once a month. However, I’m starting a new medication next week due to the worldwide shortage of Actemra as they’ve been using it to treat people with COVID. So we’ll see how that goes, as it requires me to go back on to methotrexate.

I could’ve opted for a different medication, such as a daily tablet or self-injection, but I wasn’t a fan of those options. I self-injected twice weekly for a few years, and in the end, I couldn’t mentally do it anymore. I’d get worked up about having to do it, and I found the medication wasn’t working as well. With my busy lifestyle, sitting down in the hospital for a couple of hours once a month actually suits me quite well!

How does your condition impact working and running a farm?

Hydraulics were invented for a reason! Don’t get me wrong, it’s still a very physical job, but I enjoy it as it helps me stay fit and active.

When I’m fitter, I find I don’t get as sore, or I’m at least able to handle more exercise. I also find it helps me with my mental health too. I’m lucky to be able to run two of my own businesses. One through coaching dressage and beginner riders and creating freestyle music. The other is the farm with my partner that we lease from my grandparents. I find that long days in the tractor and very repetitive movements make me stiff and sore, but I’m sure many others find that as well.

Does horse riding help?

It helps in the fact that it takes my mind off the pain while I’m riding. I do feel it afterwards though! On the days I’m in so much pain that I struggle to walk, I can ride, and the horse can become my legs for an hour. When I was younger, I was graded as a para-athlete due to the effects of my arthritis. This wasn’t a bad thing as it allowed me to make so many connections with other para-athletes. I realised that I didn’t have it bad at all, and those I felt had it worse than me were often more determined and more able than some able-bodied riders I know! The only barrier is our mind and what we think we can do. So that really allowed me to push myself to be a better rider and then pass that on when teaching children or adults with learning or physical disabilities.

How important are strong connections – e.g. family, friends, partner – when you have arthritis and chronic pain?

Having a supportive team around you is essential. I’m lucky to have a very supportive family, and my partner Owen is amazing.

There can be days when I need help with basic things like getting undressed, getting into the shower and putting my hair up or the like. For the most part, I’m totally independent, but I know that when I am going through an attack, it won’t be pleasant, and I’ll need to rely on that support.

I also have Hashimoto’s disease and fibromyalgia, so it all hits my immune system hard. From restless legs to feeling pain for the smallest of things, it can be really frustrating. So to have people to comfort you when it gets too much is really important. Sometimes we all need a hug and to be told it’s all ok to get us through the day. ?

My best friend for the last 10 years has seen me go through everything, from being really sick to the healthiest I’ve been and everything in between. We’ve travelled overseas and look forward to more adventures, hopefully soon.

I first told my story publicly on Landline earlier this year. I had messages from people from all over thanking me for sharing my story and inspiring them to go for their dreams too. So to know that my story has helped others makes me so happy!

Do you have any tips for other people who have arthritis or other musculoskeletal conditions?

The biggest piece of advice that I can give is finding what makes you happy. When I’m focused, the rest seems to blur out. Get to know your body and what you can handle, find people in similar situations and ask them as many questions as you can, and then be that person for someone else. We are all in this together and shouldn’t feel alone! There’s no reason we can’t do the things we wish to do most in today’s world.

Contact our free national Help Line

If you have questions about managing your pain, your musculoskeletal condition, treatment options, mental health issues, COVID-19, telehealth, or accessing services be sure to call our nurses. They’re available weekdays between 9am-5pm on 1800 263 265; email (helpline@msk.org.au) or via Messenger.

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04/Aug/2021

Written by Jenny Hill

Hi, my name’s Jennifer, but I also answer to Jen, Jenny, Jen Jen and for many years during primary school – ‘Skippy’ (as in The Bush Kangaroo!). I’m 39 years old and was diagnosed with juvenile arthritis (JA) when I was in grade 4.

My memories of my initial symptoms, diagnosis and treatments are a little hazy, given it was 30 years ago, but my mum has provided a timeline of my journey and our experiences. I suggest you read her blog before mine.

My first experience of the pain that I’d later identify as JA followed a routine sprain of my left ankle. It didn’t seem to heal properly, leaving me with permanent swelling, immobility and terrible pain. I quickly went from playing netball and water skiing to crawling to get around the house.

Despite seeing an array of GPs and other health professionals, there was no explanation as to why my joints were so painful.

When I was finally diagnosed with juvenile arthritis, I felt some relief amidst the initial confusion and shock. There was something wrong; it wasn’t in my head, it had a name, and there were treatments for it.

I spent that first year adapting to my new lifestyle.

During school recesses, I’d sit in a courtyard adjacent to my classroom, observing my friends who found ways to play close by. I read as many books as I could to distract myself from boredom and pain. I took drama classes instead of competing in my beloved netball. I learnt how to style my hair to cover my baldness when my hair fell out. Before I visited the hospital, I focused on the treat of a McDonalds burger rather than the painful examinations. I learnt how to ‘save up’ my strength and pain tolerance for special days such as excursions. When I could walk, I learnt that the only way to try and keep up with others was to re-work my limp (which made me look like a pretty clumsy kangaroo!). I don’t think that I ever believed that this could be permanent. I just took it day by day.

Looking back on these early years – despite the pain and frustrating cycles of treatments or reactions to medication – I can’t help but think that I was lucky in many ways. During primary school, I didn’t experience bullying. I had a large number of friends who took turns sitting with me when I couldn’t play. My teachers tried hard to understand my diagnosis and were very supportive. Having three siblings meant I was rarely lonely, as there was always at least one of them at home who I could torment from the couch! And I had parents who were 100% on my team, reorganising their lives around me, fighting uphill battles with doctors, sitting up with me on painful nights, and showing me patience – never frustration.

I eventually had periods of remission that brought a lot of relief but also a lot of anger, frustration and sadness when symptoms reappeared and interrupted my life. I stopped talking about my JA. It was too hard, and I believed no one could understand. Thankfully though, remission followed me into high school!

I moved onto high school, where I was in classes with a few students from primary school. It was cool having different subjects to study and getting to know new friends. By then, I found it considerably easier to walk distances and even play some netball without too much pain! It was no longer so obvious that I had anything physically wrong with me.

This made it very difficult for me when I had my weeks or days of flare-ups, when the pain would suddenly and viciously return. This was sometimes due to spending too long on my feet shopping and hanging out with my friends, or for no particular reason at all. When this happened, I grew incredibly self-conscious, angry and embarrassed and the last thing I wanted to do was try to explain myself to new friends.

I couldn’t even make sense of it myself.

I tried to hide it from friends, often socially disconnecting, spending lunch alone in the library and wagging P.E classes. I felt quite low during these periods and resorted to denial. I tried to deny the whole situation, even when a friend told me his mum saw an article about my JA experience in New Idea magazine. I flat out denied it (though I think the photos of me in the article gave me away!).

Thankfully, I was invited to attend camps for young people run by the Arthritis Foundation of Victoria (now Musculoskeletal Australia) around this time. At first, I was hesitant to go. But once I got there, I was amazed to be with people my age going through the same stuff, with the same limitations and experiences. It provided a space to let down my guard, have fun, talk about my arthritis without it being a big deal, and have space to vent and complain about things with people who totally got it.

There was no point denying my arthritis around these people or that I was feeling pretty low and angry at times…we all did.

I remember how all the young people had their cortisone shots just before camp so they could participate in the activities. And how at the end of the day, when all our joints were aching, we’d commandeer the spare wheelchairs and motor scooters for a game of wheelie basketball. This peer support didn’t entirely cure how I felt, but it did mark a change in my attitude towards my arthritis and a shift in my social life.

I was more outspoken to friends about my past experiences and current limitations. I found that most people didn’t have lots of questions anyway. We were teenagers, and everyone was wrapped up in themselves!

My pain became quite manageable over the next couple of years. I even wore high heels to my middle school formal – medication-free! However, I still struggled with depression at times and eventually left school.

I went back to school and then to university. I got my Master’s Degree and have spent over 10 years working as a youth worker and in academia.

Apart from the odd flare-ups here and there, I’ve remained in remission. I’ve enjoyed many travel adventures and weekends at music festivals (often on the edge of the dancefloor with friends who know my physical limitations!). I even went on a solo hike around an island in Japan for a month, camping out in a tent!

I’ve also developed osteoporosis, but that’s another story.

As fantastic as it is that there’s growing recognition of the physical toll that JA puts on a young person, it’s essential to consider the psychological and social impact of JA on young people (and on their incredible families). The transition from primary to high school was challenging for me. I believe I would’ve had a much easier time if I’d had access to peer support and targeted mental health support.

If you’ve enjoyed reading my blog, check out my mum’s blog.

Jenny Hill


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04/Aug/2021

Our journey of discovery with juvenile arthritis

Written by Cathy Hill

Arthritis isn’t something you expect to hear your nine-year-old daughter has, but that’s what we were hearing as Jenny and I sat in the rheumatologist’s office in 1991. We’d gone from one doctor to the next, trying to find out what was wrong with Jenny’s ankle, which we thought she’d sprained, but the swelling wouldn’t go down.

Jenny enjoyed playing netball and was a very proficient player. However, a few months earlier she’d tripped over a log after playing netball. Her ankle became swollen and wouldn’t improve. The usual treatments of ice, compression, elevation and rest, did nothing to ease what we assumed was a sprained ankle.

A chiropractor had successfully treated me after I’d had a similar injury, so we took Jenny to see him. After a few sessions with no improvement, he suggested we go to our GP for blood tests, as he felt the problem was ‘something internal’. Our GP refused to listen to what the chiropractor suggested and told Jenny to ‘jump up and down on the trampoline. This upset us, as Jenny had difficulty walking let alone jumping on a trampoline! Our chiropractor then recommended a GP who he felt would listen to us. This GP sent Jenny to have blood tests and then referred Jenny to the rheumatologist we were speaking to now.

We were shocked to think that a 9-year-old could have arthritis. This doctor assured us that it could be treated and that Jenny could lead a healthy and active life. He started her on Voltaren, which certainly brought down the swelling but gave Jenny stomach pains. The doctor then decided to send Jenny to a paediatric rheumatologist at The Royal Children’s Hospital where they were able to successfully change her medication. After a couple of months Jenny’s condition had improved so much that it was declared that Jenny was in remission and she was able to stop the medication.

Unfortunately, this improvement was short-lived, and after another fall at netball Jenny’s right ankle swelled up, this time even worse. Jenny wasn’t able to walk on that leg at all, and I would drop her as close to her classroom as possible so that she could virtually crawl into her classroom. Thankfully she had a very good group of friends who stayed with her at playtimes in the courtyard right outside their room. Jenny would crawl inside the house, and I would have to lift her into the bath at night. Because we’d been told that she was in remission, we decided to try another form of treatment, this time a local naturopath who had been recommended to us. That treatment didn’t work, and Jenny’s foot was not only terribly swollen, but was also sticking out at almost a 45-degree angle from where it should have been!

We didn’t know what to do, so we went back to the GP who originally referred us to the first rheumatologist. He suggested that we try an orthopaedic surgeon who told us that Jenny’s bones in her ankle had fused together, but unfortunately at an unnatural angle. He wanted to be absolutely sure that he was doing the right thing to help Jenny, so he asked us to take her into St Vincent’s Hospital where she would participate in a ‘round table’ of various doctors. The doctors agreed with the orthopaedic surgeon’s first thought that he would manipulate Jenny’s foot under general anaesthetic and put it in a fibreglass cast for 6 weeks. This was done at the beginning of 1992, and thankfully the result was that her foot was at a much more normal angle. However, the foot was still swollen, so it was recommended that we go back to see the rheumatology team at the Children’s.

So began a series of X-rays and scans, new medication, regular physiotherapy, eye check-ups, and included visits to a lady who specialised in ligament damage, and who treated members of the Australian Ballet as well as AFL footballers. I had to do exercises twice daily with Jenny, which resulted in many arguments. I had returned to full-time teaching at the end of 1991, so it was difficult enough getting four children off to school in the mornings and then getting to my own school, as well as finding the time to do the exercises with a reluctant patient! Jenny’s right leg had lost a lot of muscle tone while in the cast, and together with the fused ankle meant that she was not walking properly. It was imperative that we do those exercises, but at that time it was hard for Jenny to understand that, especially as it caused her pain.

We’d contacted the Arthritis Foundation of Victoria (now Musculoskeletal Australia) for support, and they told us about the camps they ran for children with arthritis. Jenny’s rheumatologist was very keen for Jenny to attend, as he was sometimes involved with the camps. Before she attended the first camp, he wanted Jenny to have ultrasound-guided cortisone injections in her foot, under a twilight sedative. He assured us that it was routine for the children to have cortisone injections right before the camps so they could get the most out of the camp activities. Over the next few years Jenny was able to participate in three camps, including one in Sydney with children from all over Australia. The camps were extremely beneficial for Jenny, and indeed all the participants. There were children with all different types of arthritis, some in wheelchairs, and they were offered a wide range of activities which they wouldn’t normally be able to participate in, such as scuba diving.

In 1993, in grade 6, Jenny noticed that when brushing her hair she would have clumps of hair in her brush. She was losing hair in patches. The doctor thought this was probably due to stress. We approached Jenny’s teacher and asked whether she could wear a beanie inside as well as outside, but her teacher said that as they had a policy of no hats inside, it would only serve to draw more attention to her. We could see her reason, so asked our hairdresser whether she thought she could do anything to help. She was able to tie Jenny’s hair back into a ‘half up-half down’ hairstyle, which did a pretty good job of covering the bald patches. Jenny was in a great class with generally very caring kids, so she thankfully didn’t have problems with teasing. Grade 6 also meant school production, and this is where we realised Jenny had a great flair for acting. She committed herself to learning her lines and songs and was cast in one of the lead roles – a little dog called Puddles, who had a ‘wee’ little problem! Looking back now I wonder whether the involvement in the production provided an escape from the arthritis and pain.

Secondary school had its ups and downs. It involved a new set of teachers and a new bunch of kids, mixed in with some friends from primary school. With a letter from her rheumatologist, Jenny was given permission to wear Doc Marten shoes, which gave her right ankle extra support and allowed for the orthotics that had been made for her at the Children’s. The orthotics were used to absorb shock rather than provide arch support like my own orthotics. With the fused ankle Jenny did walk quite flat-footed, but arch supports wouldn’t have helped. Later on it would affect Jenny’s driving, but eventually she found that certain cars that enabled her to sit forwards over the wheel allowed a better angle for her foot, as the fusion of the ankle meant that there was little movement up and down.

At secondary school Jenny had her group of friends from primary school as well as other new friends. However, continuing flare-ups meant that she would often go and find a quiet place by herself at school, which affected some of her friendships. At the time we weren’t always aware of how much pain she was in, otherwise we would’ve asked her doctor whether there was anything else Jenny could take for the pain.

Jenny immersed herself in the music program at school, and we went to several music concerts. She still had a great interest in drama and was enrolled in a local drama school where she took part in several productions. Jenny was able to participate in netball again, although she was confined to the goal third of the court where she became quite a proficient shooter!

When Jenny was 15, her rheumatologist considered that she was in remission, so she was able to stop her medication. She’s now 39 and has chosen to eat a vegan diet, and although Jenny can still have flare-ups of pain in her joints she’s no longer dependent on any arthritis medication.

If you’ve enjoyed reading my blog, check out my daughter’s blog.

Cathy Hill


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18/Jun/2021

A young person’s story of scleroderma

Meet Mabel. She’s 13 and has scleroderma, a chronic condition that affects the body’s connective tissue. She shares her story with Buffy.

How old where you when you were diagnosed with scleroderma?
I was 6, nearly 7 years old when I was diagnosed, and now I’m 13, so I just realised that is half of my lifetime ago!

Scleroderma’s a mouthful! Did it take you long to learn how to say it?
I knew how to say it but I didn’t really understand what it was at first. My little sisters, who were 3 at the time could also say it!

Can you remember how you felt when you were told you had scleroderma?
I was surprised, but at the time it really didn’t feel like that much. Now as a 13 year old, I can see how dangerous and scary it was.

What is the worst thing about having scleroderma?
All the medicine and appointments, because it meant that I missed a lot of school. I didn’t get to go to school as much.

Are there any good things about having scleroderma, or any ‘silver linings’?
The silver linings are that I’m not afraid of needles because I’ve had so many. When my friends and I have to have immunisations at school or a flu shot I’m not scared or worried.

You also meet a lot of kind, random people; people that you’ve never met before who give you gifts and are really nice.

What is one thing you wish someone had said to you, or wish you knew about scleroderma when you were first diagnosed?
That you don’t need to be afraid, as there are doctors and nurses who will be kind and help you, and other kind people who want to help you.

What would you say to someone else who has just been diagnosed with scleroderma?
I would tell them that all the needles are worth it, because they are going to make you healthy and your condition hopefully won’t get worse.

Take the medicine, even if you don’t know if it is going to help, your medicine will give you a better chance of improving.

What do you wish everyone else (teachers, friends, family, the big wide world) knew about scleroderma?
I wish more people knew what scleroderma is, rather than saying “what’s that?” when they either ask about my hands and arms, and I tell them it’s scleroderma and then they have no idea what scleroderma is.

Anything else you’d like to add?
Just because you have a medical condition doesn’t mean you are different, it means you have a different ability.

Appearances don’t matter because the outside is different to the inside.

If you’d like to share your story like Mabel did, about what it’s like to live with a juvenile form of musculoskeletal condition (e.g. arthritis, back pain, Perthes, fibromyalgia), contact Buffy Squires, Community Programs Coordinator at Musculoskeletal Australia.  


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27/Aug/2020

…in books, movies and TV?

One in three people lives with a musculoskeletal condition. 1 in 3. But it was almost impossible to find any decent books, TV shows or movies that feature realistic portrayals of people living with these conditions, or living with chronic pain. Even when you extend it to people living with chronic illness in general, which is an even bigger proportion of the community, it’s a tough slog through mediocrity.

I was astounded at the lack of characters living with these conditions. And when I did find some, I found many to be annoying, improbable and insulting.

Many of the stereotypes used include:

  • the person addicted to pain medications
  • the person who’s just too good to be true – nothing turns their frown upside down because they’re amazingly brave and stoic – they conquer all
  • the person who’s angry all the time, hates the world and everyone in it.

Few real people are like this all the time. Some elements may appear in our personalities and our lives, but no one is this one dimensional. So it’s sad that this is the way we’re portrayed.

It was also really depressing to see how some conditions – particularly fibromyalgia – are disparaged and often treated as a punchline. That’s so unfair.

So here’s my call to action – before I even delve into the stories I did find – let’s get our stories out there!

We can create stories and characters that are multi-faceted – we know people have more than one side or feature – because we are those people. We’re good, bad, positive, negative, strange, unique, parents, siblings. We work, we study, we get sad, we love, we hurt. We are and do all of these things, often at the same time! There’s so much more to a person that an addiction or stoicism.

So use whatever medium inspires you – fiction, film, photos, art, humour – and share it with us. We’d love to see it.

And if you’ve come across some great characters that we’ve missed in this list – let us know. We’ll add them to our blog.

Ok, rant over.

Here’s the list of the books, movies and TVs I did come across that featured more interesting characters. And a confession here –I’ve only seen/read a few, but have added lots to my enormous ‘must watch list’ and my towering ‘to be read’ pile.

Renoir (movie)

Based in the summer of 1915 in the French Riviera, this movie features an ageing Pierre-Auguste Renoir (Bouquet), dealing with the loss of his wife, the effects of rheumatoid arthritis, and the terrible news that his son Jean (Rottiers) has been wounded in action. But then a young girl (Théret) enters his world and Renoir is filled with a new, unexpected energy as the beautiful Andrée becomes his last model. Then Jean returns home to recover from his wounds and queue the love story.
Director: Gilles Bourdos
Year: 2012
Stars: Michel Bouquet, Christa Théret, Vincent Rottiers
Language: French (English sub-titles)
IMDB: https://www.imdb.com/title/tt2150332/

Words and pictures (movie)

In this romantic comedy, an art instructor (Binoche) with rheumatoid arthritis and an English teacher (Owen) form a rivalry that ends up with a competition at their school in which students decide whether words or pictures are more important.
Director: Fred Schepisi
Year: 2014
Stars: Clive Owen, Juliette Binoche
IMDB: https://www.imdb.com/title/tt2380331/?ref_=fn_al_tt_1

The Good Doctor (TV)

This popular TV medical drama revolves around young surgeon Dr Shaun Murphy (Highmore) who has autism. In season 3 one of his colleagues, Dr Morgan Reznick (Gubelmann) opens up to senior surgeon Dr Glassman (Schiff) about having been diagnosed with rheumatoid arthritis. She needs his help to get a cortisone injection so she can perform her first surgery. She discusses with him her concerns about how the other surgeons may assume RA will affect her ability to operate and do her job.
Creator: David Shore
Year: 2017-
Stars: Freddie Highmore, Richard Schiff, Fiona Gubelmann and many others.
YouTube: Dr Reznick wants Dr Glassman to keep her condition a secret

The Big Sick (movie)

Written by Emily V Gordon and her husband Kumail Nanjiani, this romantic comedy is loosely based on the real-life courtship before their marriage in 2007. While they were dating Gordon became ill and was put into a medically induced coma. She was later diagnosed with Still’s disease.
Director: Michael Showalter
Year: 2017
Stars: Kumail Nanjiani, Zoe Kazan, Holly Hunter, Ray Romano
IMDB: https://www.imdb.com/title/tt5462602/

Five feet two (doco)

This documentary follows Lady Gaga as she gets ready to release her fifth album and struggles with the physical and mental ups and downs. During the documentary she talks openly about her fibromyalgia.
Director: Chris Moukarbel
Year: 2017
Stars: Lady Gaga
IMDB: https://www.imdb.com/title/tt7291268/

Maudie (movie)

This romantic drama is based on the real life story of Canadian folk painter Maud Lewis (Hawkins). Maud was born in 1903 and diagnosed with juvenile arthritis as a child. This movie tells the story of love of painting, her marriage to Everett Lewis (Hawke) and her recognition as an artist.
Director: Aisling Walsh
Stars: Sally Hawkins, Ethan Hawke
Year: 2016
IMDB: https://www.imdb.com/title/tt3721954/?ref_=fn_al_tt_1

Cake (movie)

Cake tells the story of Claire (Aniston) who struggles with chronic pain and depression after a car accident that also killed her son. She becomes addicted to pain killers (sorry) and joins a chronic pain support group. Through this group she meets Nina (Kendrick) who later commits suicide. The story goes on to explore Claire’s relationship with Nina’s husband (Worthington) and son, her relationship with her estranged husband and how she tackles physical and emotional pain. https://msk.org.au/persistent-pain/
Director: Daniel Barnz
Stars: Jennifer Aniston, Anna Kendrick, Sam Worthington
Year: 2014
IMDB: https://www.imdb.com/title/tt3442006/

Cursed (YA book)

As if her parents’ divorce and sister’s departure for college weren’t bad enough, fourteen-year-old Ricky Bloom has just been diagnosed with juvenile arthritis. Her days consist of cursing everyone out, skipping school–which has become a nightmare–daydreaming about her crush, Julio, and trying to keep her parents from realizing just how bad things are. But she can’t keep her ruse up forever. https://msk.org.au/juvenile-idiopathic-arthritis/
Author: Karol Ruth Silverstein
Year: 2019
Publisher: https://www.penguinrandomhouse.com/books/588565/cursed-by-karol-ruth-silverstein-author/

Sick kids in love (YA book)

Isabel has one rule: no dating. All the women in her family are heartbreakers, and she’s destined to become one, too, if she’s not careful. But when she goes to the hospital for her RA infusion, she meets a gorgeous, foul-mouthed boy who has her rethinking the no-dating rule and ready to risk everything.
Author: Hannah Moskowitz
Year: 2019
Publisher: https://www.panmacmillan.com.au/9781640637320/


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13/May/2020

Thanks to one of our MSK Kids parents who has written this blog for us. They have chosen to remain anonymous. 

When our world changed rapidly at the end of March due to COVID-19 social distancing regulations and remote learning, I was amazed that my child wasn’t freaking out about all the changes taking place. I put it down to her wonderful teachers and the fact that she has dealt with a major event in her life already, a chronic health condition and immunosuppressive treatment. Here are some of the ways my child has had the dress rehearsal to COVID-19, and so have we as parents.

Experienced at social distancing

When you have an immune suppressed child you have already had to cancel play dates, sleepovers and extra-curricular activities. Your child has already stopped sport at some stage, and has probably missed important days at school or with friends. You have already been fearful of every cough and sneeze in the classroom and you know the times of the year when chicken pox cases increase.

We’ve been using hand sanitiser already

Ask any parent who has spent time with a child in hospital, and chances are they know the smell of Microshield® very well (the brand of hand sanitiser in most Australian hospitals). We’ve been used to having good hand washing habits and know the importance of alcohol-based agents to clean hands. You probably already had a decent amount of hand sanitizer at home before COVID-19, as well as alcohol-based wipes (especially if you have to administer subcutaneous injections).

We know and appreciate our healthcare workers

It didn’t take this pandemic for us to appreciate our wonderful healthcare workers. We’ve known this for years through our regular interactions with doctors, nurses and allied health workers. Hopefully everyone else now recognises the importance of good health in our lives and our amazing healthcare workers.


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13/Mar/2020

Having children, self-belief and acceptance

Written by Shirani Wright

Read part 1 of Shirani’s story.

Another thing that was very hard for me – and I’m sure turned out much better than the doctors thought – was having my children. I don’t think my rheumatologist was overly keen on the idea, but he knew me well enough, not to try and talk me about of it as he knew that nothing was going to stop me and nothing did!

I was advised that I had to come off my methotrexate for three months before we started trying to get pregnant. This is because it’s a category X drug for pregnancy and can cause serious birth defects, including spina bifida. This was a bit scary.

The doctors thought that, by coming off methotrexate, I might have a big flare-up and not be able to even get pregnant. I came off methotrexate and luckily for me, no flare-up. They also thought if I did get pregnant there were a lot of other possible complications that could have resulted in the baby being born early.

My doctors pretty much implied I was too sick to get pregnant and carry to full term. Well, you know what they could do with that idea!! Even if I had to sit in bed for nine months and not move, I was determined to have children and that’s what I did. I have two beautiful girls, Chloe and Jacinta. I’m not going to say it was always easy, but it was worth it. I feel extremely luckily to have my two healthy girls.

I’d like the all the parents of kids with arthritis, and children with arthritis, to know it’s possible to have children of your own if you want to, even if you do have arthritis.

Having arthritis does make looking after my girls difficult sometimes, but I wouldn’t have it any other way. I wasn’t about to let arthritis stop me from having children!!! It’s easier, now they are both at school. I’m also very lucky to have a very supportive husband who understands my health issues and does a lot with the children as well as working full time and supporting me emotionally.

I also get emotional support from my friends, and family, but I’ve found that the Young Women’s Arthritis Support Group has helped greatly, as everyone in the group knows what it’s like to be in pain, be on medication, have bad days and everything that goes along with having a chronic illness.

I believe having arthritis has made me a strong person mentally and that it has helped me develop a positive attitude towards life. It often hasn’t been easy but I’m not one to back down from a challenge. I sometimes wonder what I’d be like as a person if I didn’t have arthritis.

We all have our limitations whether we have a disability or not. There are those who might not be able to walk but they might be a terrific artist. People with a disability can have just as fulfilling a life as someone without one. We can do anything we set our mind to. It might just take a bit of extra work but we can do it.

If I can give any advice to children with arthritis I would say, we need to believe in ourselves. We need to accept that we have a disability and that we have limitations but we shouldn’t let our disability define who we are. We are more than our disability.

To leave you, I’ll finish with a thought. Never give up and always shoot for your dreams!


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12/Mar/2020

Growing up, school and working

Written by Shirani Wright

I wake up in the early morning to go to the toilet. I look at the time – 5.00am – early enough to take my tablets. I turn on the lamp and automatically reach over and take my prednisolone, plus eight other tablets so they have time to work before I need to get up and get my girls ready for school. I go back to sleep until my alarm goes off at 6.50am and then I start my day.

Taking medication is a part of my life as I have systemic juvenile idiopathic arthritis. I was three and a half when it all began.

It started when I got bronchitis. My condition worsened and I was in hospital for six weeks. No one knew what was wrong with me. The doctors thought I had pneumonia, and although I was on IV antibiotics I just wasn’t getting better.

I was transferred to The Royal Children’s Hospital, where I had a number of investigations on my lungs and they discovered that I had a massive amount of inflammation. With this discovery and further tests, I finally had a diagnosis – systemic juvenile idiopathic arthritis or SJIA, an autoimmune condition that has stayed with me to this day. Not many people know that lung involvement, like I had, can be a part of some types of arthritis. And for me, joint involvement happened a bit later.

Since I was diagnosed at 3, I don’t remember not having arthritis. I think maybe this has made it easier for me than other people I’ve met who got arthritis at an older age, who might have been used to a certain life. I don’t remember what it’s like not to be in pain or discomfort every day or not to regularly go to the doctors, have tests, and be in hospital. It’s all just a part of my life and I’ve accepted it.

My twin sister and I had tennis lessons for a while but I remember I couldn’t run fast enough. I also did gymnastics too, so as you can see I didn’t let my arthritis stop me! My sister played basketball with a school friend for a time, I didn’t because of my arthritis. I don’t remember being particularly upset by this. I used to go and watch her team play and sometimes score for them.

At school, my arthritis didn’t affect me that much. I pretty much always joined in with PE unless I was having a particularly bad day. Sometimes if we had to walk somewhere from school my mum would organise for me to get driven by one of the teachers and I could always take a friend. Sometimes I’d be late getting to school if I was waiting for my tablets to work.

I felt like I had a bit of support from Musculoskeletal Australia growing up but not as much as there is available now. The Arthritis Foundation of Victoria (as it was known back then) ran camps during the summer holidays as a way for young people with arthritis to get together, meet each other etc. On these camps, they offered workshops run by doctors, massages and free time. It also gave us the chance to meet other young people with arthritis.

Up until those camps, I think I had only met one other child with arthritis; that’s why I think MSK Kids is a really great idea. It gives kids and young people an opportunity to meet each other and support each other. It also gives their parents the same thing. I’m sure my parents would have liked to have known some parents of kids with arthritis.

One thing I didn’t like about having to take medication for my arthritis is that because I’ve taken prednisolone since I was 3 (and I’m still on it 41 years later) it has stunted my growth. So when I was 15 years old, I looked 10 or younger, and that really used to bug me! I remember once I was in a shop with my mum and the shop assistant said, “are you mum’s little helper” and I got really upset. As my mum said though, it’s not her fault she doesn’t know. Now that I’m an adult, being short doesn’t worry me really from a social point of view, it’s more on a practical side when I sometimes have trouble reaching things at the supermarket, or glasses on shelves etc.

I think one thing that got me through childhood with arthritis,(apart from my mum)
is a positive attitude. Because I have arthritis there are things I can’t do. However, I try to concentrate on what I can do rather than what I can’t. This isn’t always easy, but I try and take the attitude that there’s no use worrying about what I can’t do, as that won’t change the situation. I try not to get grumpy or sad about it as this doesn’t change anything. It just gets me down and isn’t much fun for the people around me.

It’s not always easy to accept my limitations but I try and think “well everyone, including healthy people, has limitations”. Not everyone can run a marathon but does that mean they’re not as good as someone who can? I would say NO. Those people who can’t do one thing might be able to do something that another person can’t do. A fish can’t walk, but they’re happy.

One limitation I have had to deal with because of my arthritis is that I’m not working.

I left school and went to university and then TAFE. I worked in several part-time jobs over 10 years. I had to change fields of jobs from Nanning to reception/admin work as nannying was too physical. I did try working full-time for a year and a half but ended up in hospital as I often became breathless (which happens a lot with my type of arthritis).

At that stage, my doctor said I needed to cut my hours back. I found this hard as up until then my arthritis had not really limited me in a big way. But the fact that I couldn’t work full time was a big thing. It made me feel like I was sick and not normal.

One of my friends didn’t understand this. She said it was good that I only had to work part-time. What she didn’t understand was that working part-time wasn’t a choice! I didn’t choose it, I had to do it for health reasons. After some time and thought, I accepted this change and continued with my life. I no longer do any paid work as my health isn’t up to it.

Read part 2 of Shirani’s story.




Musculoskeletal Australia (or MSK) is the consumer organisation working with, and advocating on behalf of, people with arthritis, osteoporosis, back pain, gout and over 150 other musculoskeletal conditions.

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