juvenile arthritis - Musculoskeletal Health Australia (MHA)

12/Dec/2023

This blog was written by Sass, a member of our Teen Talk group.

So. You want to know what life might look like at Uni with a musculoskeletal condition / arthritis? Well, as an individual whose bones/joints/various other systems dislike her, and who has completed her first year of uni, allow me to provide an insight into my experience in the hope it can help you too.

Right. Starting off strong with disability services. You should absolutely get in touch with any disability services on campus ASAP. Do. Not. Wait. They can help you navigate your Uni experience as a person with a chronic condition. I waited too long, and was ✨stressing✨ when in reality I could have fixed that by being on top of getting my accommodations earlier.

Ok, you’ve got your accommodations. What can you expect now?

For me, my hypermobility makes fine motor skills inconveniently painful, and so in line with this (and the general nature of Uni assignments often being digital) I was able to access my exams and tasks on a purely digital basis unless absolutely necessary. When I couldn’t use tech, I was provided with a student peer who scribed for me, and they were all the most lovely people. I also got extra time, which I rarely used if at all, but it’s good to have that up your sleeve regardless if you might need it.

Uni is also a very social time, and let’s be honest, socialising can be a little draining sometimes (where my introverts at?). The most important thing to remember here is that you should surround yourself with friends who are able to understand that you may require more rest or downtime, and/or that you may need activities to be modified for your enjoyment. Please, please, please, promise me you won’t burn yourself out by not speaking up about your needs. You deserve to be respected in all situations.

Managing the stress of exam season? Been there, and I’ll unfortunately continue to do that for the next two years! How I manage involves reading before bed to ensure I get good sleep, going on gentle walks, basically trying to reduce stress. I drink a lot of tea as well, and have the occasional hot choccie (gotta treat yourself, right?) and this helps me to relax. Also, I’ve been trying to stop myself from comparing my results to others. You are in a race ONLY WITH YOURSELF. Your only opponent is your personal best.

Ok, in summary:

respecting your needs + having reliable friends + not comparing yourself to others + getting accommodations ASAP = good year.

Now, in the words of Ignatius Loyola, go forth and set the world on fire. 🙂

If you’d like to write a blog to share with our community, please contact us

Contact our free national Help Line

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

More to explore

MSK Kids
Musculoskeletal Australia supports children and families with juvenile idiopathic arthritis (JIA) and other musculoskeletal conditions. Check out our full range of resources and support services.

Karla Wignall

12/Dec/2023

Our child has seen so many specialists and now they have been told to go to a kid’s physio. Are you thinking how will a physio help? Or how will this be any different to any other appointments we have? What do I tell my child they will be doing with them?

I am Nicole Pates, a Titled Paediatric Physiotherapist and director of Western Kids Health, a paediatric clinic in Perth Western Australia. I have been a Paediatric physio for over 13 years and these are the things I would like you to know about seeing a paediatric physio.

Children and teenagers, as we all know, are different from adults. Not just physically, but in all of their systems. Their brain is growing and their understanding of their body and how it works is constantly changing. Add into that school, friends and puberty and well, it can be a lot. Let alone managing chronic pain and fatigue on top of this. This is why it is important to work together with a physiotherapist who is experienced in working with kids and teens, who understands growth and development. You can search for a Titled or Specialist Paediatric Physiotherapist, who has undertaken extra study or experience in paediatrics, on the Australian Physio website https://choose.physio/find-a-physio

For families of children with persistent pain and / or fatigue, finding the right help can be tricky. You can find a practitioner experienced in working in paediatric pain on the Australian Pain Society website https://www.apsoc.org.au/Home/wcontent2/60

Once you have chosen a physiotherapist you will be *hopefully* be on your way to an appointment. You may be required to fill out some questionnaires or forms, prior to your initial appointment, depending on your reason for visiting the physiotherapist.

Typically, an initial appointment for children with chronic musculoskeletal / rheumatological conditions will be an hour or potentially more. For some families at Western Kids Health, we might sit down for 2 hours with not just physio but also OT and psychology. I encourage you to contact your chosen clinic to find out more about the first appointment. It is important to dress in clothes that are comfortable to move in and take a water bottle if needed.

Your physiotherapist may ask lots of questions in the first appointment. Not just about your child’s condition, symptoms, history, current team and limitations but also about their strengths, likes and future goals. Your physio will then watch how your child moves and plays, particularly the things they are having trouble with.

We love watching kids move and figuring out the different reasons as to why they might be having trouble or moving differently.

Being able to identify the activities that trigger your child’s symptoms, understanding their experience and watching how your child moves will enable your physio to work with you to formulate a plan. This plan should be collaborative and based around your child’s goals such as getting back to school, sport or hobbies. Having pain or fatigue can be so annoying and make moving and doing things difficult. But with chronic conditions, waiting for the pain or fatigue to go away before you get back into things can be an endless waiting game. Your physio will help you get back into doing things in a way that is meaningful, fun and supported.

Your physio may also provide education around:

Symptoms such as pain and fatigue and potential triggers / aggravators
Strategies on how to bring awareness to and strategies to minimise triggers and aggravators
Why your child may be experiencing pain.
How best support your child and their pain journey through supportive language in a progressive mindset

Your physio will also work hard to understand where your child’s physical function is at present and work out a plan to build on their activity level, strength, balance, movement control and most importantly, function over time. Your physio will support your child (and you!) with a plan for flare ups or set backs.

Other team members who your physio may recommend supporting you are

An Occupational Therapist, who assists your child to minimise the impact symptoms may have on sleep, school and relationships
A Dietician to understand your child’s nutrition needs whilst they are growing and create plans to support and meet these needs
A Psychologist to build coping skills and resilience and manage mental health symptoms such as low mood, stress or anxiety. This is important as often these symptoms are contributing to or exacerbating your child’s ability to engage in the physical rehab.

At Western Kids Health we run specialised groups in conjunction with the Arthritis & Osteoporosis Association of WA, including group hydrotherapy and strength and conditioning classes.

Hydrotherapy and physical conditioning for children with conditions like Juvenile Idiopathic Arthritis is safe and effective. Building strength through range is essential to keep your joints healthy. Your physio will work with you to help your child understand their body’s reactions and sensations as they try new activities. This will help your child build their capacity and understanding of body awareness. Your physio will help explore what movements and types of exercise work best for your child’s body, and most importantly making it fun!

You should see improvements over time with the right support and if you aren’t seeing those improvements, or your child isn’t reaching their goals, please discuss this with your therapy team.

Contact our free national Help Line

More to explore

MSK Kids
Musculoskeletal Australia supports children and families with juvenile idiopathic arthritis (JIA) and other musculoskeletal conditions. Check out our full range of resources and support services.

Lisa Bywaters

19/Apr/2023

A journey of overcoming challenges and finding opportunities

Written by Tim Allen.

Living with Perthes’ disease has presented numerous challenges, especially during my school years and early 20s. However, despite the limitations imposed by this condition, I never lost my fascination for life and my desire to experience everything the world has to offer.

When I was 6 years old, my mother noticed I was beginning to limp, and that it was uncomfortable for me to move. I was diagnosed with Perthes’ disease and pretty quickly underwent surgery and had a plate inserted and my legs cast in a splint. I had a frame and got around in a wheelchair for a bit. My friends and class mates coined the nickname ‘Timmeh’ after South Park’s Timmy, but not once did it ever feel like bullying. I was lucky enough to have a good bunch of friends, and although they probably had no idea what I was going through, they were supportive and kind.

When I came out of the cast and splint, I had to sit out from all sports, even non-contact sports, due to the pressure on my right hip. While I longed to play football, basketball, and skateboard like the other kids, my condition made it difficult. It was hard to understand at the time, but it would set me up for a really meaningful life. Not being able to participate in high-impact sports and the communities around them was challenging, but it presented me with other unique opportunities and experiences, which I’m incredibly grateful for.

One of those drivers was to become creative, and I began to develop interests in art, music, photography and computers. While I wasn’t aware of it at the time, the life that these interests would present to me would allow me to see, travel, and experience more than I could imagine.

I had always been interested in photography, playing around with the family camera and looking through the hundreds of 6x4s in family photo albums. Full of birthdays, events and family holidays my teenage brain was in overdrive! My grandparents on both sides amazed me with all the places they went, and I enjoyed looking into this portal into the past. What would my future look like?

I really wanted to play the drums and did for a while, however, it became more and more difficult to deal with the pain. I knew I had to be selective about my interests and focus on what I enjoyed. Photography became my number one passion.

Some of the more severe instances of pain I experienced were on extremely hot and cold days during my early 20s. I had become a little complacent as I developed from my teen years into early adulthood and thought my hip was strong enough to bear my weight and movement and do most of the things I wanted to do. I was wrong. The pain would present as a sensation of expansion and contraction which aligned with the weather conditions. I used a heat bag to sooth the pain and looked for ways to build the muscle once the conditions had settled.

Referred pain became more common, and I knew I’d have to step up my game. I began a program of light exercise, walking, stretching, and breathing techniques. Gradually the pain began to lift, and I became more mobile. The solution was making these activities fun, encouraging me to build them into my routine, resulting in regular exercise and a much healthier lifestyle.

Having Perthes’ disease helped me realise that without it, I wouldn’t have found the drive to develop myself as I did. And I wouldn’t have met the circle of people who are now lifelong friends. I knew my journey would be different, so I learned to embrace that. I attribute much of my success to the support of my family and friends. They’ve always encouraged me to keep moving forward and just keep moving!

Living with Perthes’ Disease isn’t always easy. But it’s taught me to embrace challenges and find opportunities where others may not see them. I’m grateful for the lifelong friendships and the unique opportunities and experiences they presented to me. I hope sharing my story can inspire others living with similar conditions to keep looking forward and making the most of every moment.

Tim is now working in the final stages of completing a Master of Arts Photography at Photography Studies College and will present his first debut solo show in June 2023. You can find more information through his website and social channels.

Lisa Bywaters

21/Feb/2023

To manage foot and lower limb pain in children

Guest blog written by podiatrist Daniel van Hoof-Harkin, B. Pod (Hons)

When a child starts to complain of pain in their legs or feet for whatever reason – after activity, ‘growing pains’ at night, or joint inflammation caused by a condition like juvenile arthritis (JIA) – often the first thing I’ll look at is their footwear. Specifically, what footwear they wear and when and how they wear them. I’ll then spend time discussing and trying to recommend footwear. That’s because good shoes can be a first-line treatment in relieving pain.

To help you choose the best footwear for your child, here are my suggestions for things to look for.

Getting the right support

To a large extent, you get what you pay for with shoes. Cheaper shoes are usually made with lower quality materials and have less support than more expensive footwear. This is why quality shoes can cost significantly more.

When I look at a pair of shoes for someone in pain, I’m looking primarily at four things:

Heel pitch – Also known as drop or offset, it is the difference in height between the heel and forefoot within the shoe. Ideally, shoes should have approximately 10mm, as this helps to reduce the effects of reduced ankle range of motion, or for high arched people whose forefoot sits lower than their heel.
Torsional rigid shank – This is the stiffness of a shoe between the heel and the forefoot and helps to stabilise mobile feet, especially on graded surfaces.
Heel counter – This is usually a piece of plastic that wraps around the heel in shoes and helps to reduce inversion and eversion of the rearfoot during lower impact activities.
Upper fixation – This will normally be achieved with either Velcro or laces, but also aided by the upper of a shoe.

Most brand-name sneakers will have all of these qualities, which will help support the feet and legs of children, whether they’re walking or running. However, if a shoe lacks any of these qualities, it’ll provide less support for your child’s feet.

For example, Mary Jane style school shoes don’t have as much upper, and only a single strap to secure them. That means they’ll offer less support than a pair of laced shoes.

Mary Jane school shoes Laced school shoes

Orthotics – Yes or no?

Orthotics can often be a controversial subject, but just like any form of therapy, if used correctly, they can make a big difference for a child with leg or foot pain. And there’s evidence that they have a place in managing JIA and hypermobility-related disorders.

But when should they be considered? Sometimes I’ll recommend foot orthotics immediately, and other times I’ll let people know they’re unlikely to help their symptoms. As a general rule of thumb, if your child has good quality footwear and wears them appropriately, but they’re still experiencing ongoing pain, they may require some form of in-shoe support. In this case, visiting a podiatrist for an assessment would be worthwhile.

School shoes vs trainers

A good quality trainer is usually a more comfortable and better option for most active kids. This is because trainers have thicker midsoles that provide a good balance between structure and cushioning, especially when kids play on hard graded surfaces like concrete. School shoes are usually more of a dress shoe, which means they have less cushioning and generally don’t tolerate as much punishment as trainers.
At the end of the day, school shoes are often determined by the uniform requirements of the school, and if dress shoes are required, then fit and comfort when wearing need to be the most important factors.

Alleviating foot pain

When recommending shoes to parents, I’ll often ask how active their child is. I’ll then ask, ‘if you were going to be doing the same things as your child, which shoes would you choose to wear?’ Imagining yourself in your child’s place means you’ll have a better understanding of what’s most appropriate.

The other aspect we don’t often realise is how hard graded surfaces can be on our feet and ankles. If your child is susceptible to experiencing pain, then I’d recommend they wear structured sneakers more often. It’s also important they wear them on outings to places like shopping centres, theme parks, or on days with lots of walking. Less structured footwear like thongs, or ballet flats, should only be used for short outings, where there won’t be much walking involved.

Leg length discrepancy and heel lifts

Differences in the length of legs, or leg length discrepancies, happen more frequently than we think. It’s been reported between 40-70% of the population have a difference in leg length, and one in every 1000 people can have a difference of greater than 20mm.

Leg length discrepancies can be difficult to assess clinically and almost impossible to measure accurately without performing scans to assess bone lengths and joint alignment. Also, kids can often grow asymmetrically, meaning one leg may grow faster than another. However, I often see these leg length differences have disappeared 6 months later.

So I’m usually not too concerned when I come across a leg length discrepancy unless the child has pain I believe is being influenced by it or the leg length difference is such that I see significant postural problems occurring. Once again, if there’s concern about the presence of a leg length discrepancy, it’s worth having it assessed by a health professional, and whether it is indicated to include a heel lift under the shorter leg.

Finding the right fit

Ultimately, the most important thing when it comes to footwear for any child is fit. Given how quickly children can grow, keeping up with their shoe size can become a frequent and sometimes costly exercise. However, it’s vital for growing feet.

Making sure that shoes aren’t too small is essential, as small footwear can cause pain, injury, and difficulty with movement. When checking shoe fit, try and establish their size when they’re standing. This is because feet may become longer when standing, changing the shoe size compared to sitting. It’s also important that the footwear isn’t too big, as this can cause increased movement within the footwear that can affect stability. If shoes are too long, they can also pose a trip hazard to a child.

This advice is, of course, very general, and individual needs will vary. But as a starting point for parents of children with lower limb pain, this advice can be a useful for reducing symptoms.

Contact our free national Help Line

Call our nurses if you have questions about juvenile arthritis, managing pain, treatment options, or accessing services. They’re available weekdays between 9am-5pm on 1800 263 265; email (helpline@msk.org.au) or via Messenger.

Lisa Bywaters

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 pain, musculoskeletal 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.

More to explore

Juvenile arthritis (JA)
Arthritis Foundation
Juvenile Arthritis
American Academy of Orthopaedic Surgeons
Juvenile arthritis
American College of Rheumatology
Juvenile Idiopathic Arthritis (JIA)
National Institute of Arthritis and Musculoskeletal and Skin Diseases
Juvenile idiopathic arthritis (JIA)
Versus Arthritis
Resource Hub
JIA-at-NRAS (National Rheumatoid Arthritis Society)

Lisa Bywaters

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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MSK Kids
Musculoskeletal Australia supports children and families with juvenile idiopathic arthritis (JIA) and other musculoskeletal conditions. Check out our full range of resources and support services.

Lisa Bywaters

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

Lisa Bywaters

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

Lisa Bywaters

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 us here.

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 us here!

Lisa Bywaters

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://muscha.org/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://muscha.org/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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This blog was written by Sass, a member of our Teen Talk group.

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…in books, movies and TV?

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