Wear Purple for JIA 2025: A Splash of Purple for a Powerful Cause

The National Rheumatoid Arthritis Society (NRAS) is thrilled to announce the return of its annual #WearPurpleForJIA campaign, set to take place on Friday, 23rd May 2025. This colourful initiative aims to raise awareness and funds for children and young people living with juvenile idiopathic arthritis (JIA), a condition that affects over 10,000 children in the UK. 

The 2025 campaign comes with an exciting twist—the Purple Gunge Challenge! Participants are encouraged to nominate their favourite teachers, colleagues, or healthcare professionals to take a seat in the “Gunge-Seat.” The individual with the most donations will be ceremoniously “gunged” with purple slime – a spectacle no one will forget! With only 50 free Purple Gunge Packs available, participants are urged to act quickly and pledge a minimum of £100 to secure their spot. 

In addition to the Gunge Challenge, supporters can get involved by organising Purple Bake Sales, hosting Purple Crazy Hair Days, or even throwing Purple Parties. Whether at schools, workplaces, or community centres, the possibilities for creativity are endless. All proceeds will go towards supporting our mission to improve the lives of children with JIA through education, advocacy, and direct support. 

To join in, order your Wear Purple Pack today and start planning your purple-themed event. Share your photos and stories on social media using the hashtag #WearPurpleForJIA, and let’s colour everything purple for a cause that truly matters. 

For more information, visit the official Wear Purple for JIA page and help make a difference in the lives of children living with arthritis. Together, we can turn awareness into action! 

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Being so young, I do not remember my initial diagnosis, but my parents took me to the GP because my right knee was hot and swollen, I had difficulty walking and I cried a lot. Thankfully, the doctor diagnosed me quite quickly with JIA and referred me to a rheumatologist. Unfortunately, in the 1980s there were limited treatment options available, and my JIA quickly developed to affect all my joints by around aged 12.  My earliest memories of having JIA were unpleasant: horrible tasting tablets, uncomfortable night splints, and frequent visits to the hospital, either to see the rheumatologist, who was tall and intimidating, or to have procedures done such as draining fluid from my knee. But I also have fond memories of my amazing physiotherapist, Maggie, whom I saw every week until I was 16 years old, and her lovely rocking horse in the waiting room at the children’s centre. 

I am fortunate that my diagnosis was quick, and shortly after being referred to the local rheumatologist, I went to see the leading expert in JIA at the time, Barbara Ansel, in Leeds. As well as receiving local care, I continued to go to her clinic annually throughout my childhood.  A major turning point for me was when I attended a residential activity week run by a young people’s arthritis charity at age 14.  This was the first time I had ever met anyone else with JIA.  I found out that I wasn’t alone, and I met other children going through the same things as me.  It gave me so much more confidence and helped me to accept my JIA.  I would strongly encourage anyone with JIA to try to meet other people with the condition if they possibly can.    

There was limited medication for JIA when I was a child, but in my early twenties, I was among the first people to be prescribed biologic, Abulimubab (Humira).  This, along with a bilateral hip replacement in my twenties, was a huge turning point for me and my JIA, and reduced my joint pain and swelling significantly.  

Being a farmer can be very physical, but I have taken on jobs on the farm that I can manage, such as feeding young calves, helping milk the cows, managing our team of staff, and doing the paperwork. I find being outdoors every day and as active as possible really helps reduce my pain and stiffness, and spending time with the animals aids my mental health so much as well.  Even on days when my JIA is bad, I still try to go outside for a little while and do a few jobs. I have found ways around some physical tasks, such as using a cart for moving heavier items or installing wheels on the bottom of gates.  There are of course things that I can’t do or would be dangerous for me to do, but the whole team works together to get everything done.   

My JIA is quite visible and there will always be pre-conceptions especially from those who don’t know me.  I still get sales reps asking to speak to my dad, assuming he manages the farm day-to-day, but I now find this quite funny. I have a can-do attitude and hopefully by now the people that matter know I am capable. My JIA is also still very much active and affects me daily, although my medication is fantastic at keeping flares to a minimum.  Unfortunately, I suffered a lot of joint damage when I was younger – around 15 years ago, I had my elbows replaced at Wrightington hospital and I am likely to need more replacement surgery in the future.  That’s why keeping active is so important to me, and I hope to be farming for many more years to come.   

My advice to those living with JIA or another rheumatic condition, would be to never let anyone tell you that you can’t do it, fight for what you need medically, and ask for help when you need it.  Living with JIA is hard, and it will have a massive impact on everything in your life, but it is just part of you, and, with the right support, you will be able to achieve anything you want to do.  

These days, the agricultural industry is a much more inclusive sector in which to work.  Farms and the wider industry use so much technology that make many physical jobs easier and more efficient but there are also many exciting, rewarding, non-physical career paths available.  I think many of the characteristics of a person with an arthritic condition such as determination, problem solving, and empathy are exactly those required and valued in farming.   

So finally, I can say with confidence to anyone considering this industry, you can absolutely follow a dream to work in agriculture with JIA/RA.  

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This is JIA. 

I was diagnosed with Systemic Juvenile Idiopathic Arthritis (sJIA), also known as Still’s Disease, when I was just five years old back in 1973. It’s a rare and debilitating form of Juvenile Idiopathic Arthritis (JIA) that has profoundly impacted my life journey.

The first signs were bronchitis-like symptoms that escalated into high fevers, swollen and painful ankles. After misdiagnosis and ineffective treatments, months of uncertainty followed with tests for various infections before finally concluding it was Juvenile Rheumatoid Arthritis (now called JIA). This marked the start of my lifelong relationship with rheumatologists and other medical professionals.

 

Initial treatment, as it was limited at the time, involved steroids, anti-inflammatory drugs, and a diligent exercise regime encouraged by my supportive dad through small bribes despite my pain. The inflammation was difficult to control, requiring ankle callipers that led to teasing from other children. However, my family ensured I could still enjoy activities like hiking and camping, sometimes carried on my dad’s back.

At age seven, my health critically worsened when I contracted the rare Reye’s Syndrome, landing me in a coma with an uncertain recovery after my heart stopped beating. Thankfully, the doctors’ commitment and my family’s support helped me survive, though with persistent memory retention issues.

My care later transferred from my local rheumatologist, who had been very supportive, to a specialist in Juvenile Rheumatoid Arthritis, down south. She played a pivotal role in my life with her dedicated treatment approach of anti-inflammatories, steroids, antibiotics and exercises. This allowed me to eventually go into remission for a couple of years until a polyarthritis flare-up followed after stepping on something sharp. 

Over the years, I underwent various treatments like disease-modifying drugs, physiotherapy, hydrotherapy, and multiple surgeries.  My education was impacted by long absences, but I persevered through home tuition, supportive friends, and cherished horse-riding as an escape. I looked like everyone else once on the horse. 

My partner and I lived our early life together to the full, and despite me finding it difficult to manoeuvre on and off a bike, we were keen motorcyclists.  The systems engineering career I loved was cut short by redundancy due to frequent hospitalisations, but I was determined to work and started a secretarial services business. Infact, despite immense challenges in my life including a long, difficult journey to pregnancy, an ankylosing spondylitis diagnosis, multiple hip replacements, and continued joint damage, I have remained resilient through tremendous determination and family/friend support.

Maintaining open communication and mutual respect with my consultants has been invaluable, as has voluntary work and cherishing motherhood. Confidence issues stemming from an unconventional childhood linger but have improved significantly. Multiple joint damage and pain continue to govern and impact my life. I would love to ride a bicycle with my daughter and husband, but limited movement and pain hinder this. I love gardening but it doesn’t love me, and I’m restricted in what I can do. Fatigue is also a huge issue. I continue to undertake a lot of voluntary work due to the impact JIA has had on my career and work.

I’m now awaiting further shoulder replacement surgery while writing a book about my decades-long journey with sJIA and chronic pain in the hope of helping others affected by this disease.

With resilience and love from my support system, I strive to live life to the fullest despite the obstacles Still’s Disease presents.

My advice for anyone living with JIA is to just try things and never give up.

The post #ThisIsJIA by Gail Molyneaux appeared first on JIA.

Pre 2002 I was so full of life, I did Gymnastics, Netball, a bit of Cricket and I absolutely loved sports day, I ran the 200m every year! I caught the Flu in April 2002; I was quite poorly and lost my voice for about a week. Although I recovered from the flu, as the weeks went on something didn’t feel quite right; my right elbow started to really hurt, and I could not straighten it. My dad would constantly say “what’s with your arm?” or “straighten that elbow Mel” but I simply couldn’t. I was getting tired just putting my shirt on for school and it was so painful.  Therefore, in September 2002, my mum took me to the doctor who said, “it’s just a strain, probably from Netball, it’ll get better with exercise”. Unconvinced, she sought a second opinion, and the second doctor said immediately “I think it’s Juvenile Idiopathic Arthritis,  we’ll get a blood test done.”  The very next day I was at the hospital having bloods, and we had to wait there for the results.  

The results were in… 

When the words “Juvenile Idiopathic Arthritis” came out of the consultant’s mouth, I refused to believe it – in fact, the first thing that I said when I heard the word ‘arthritis’ was “but I’m not old”, the most common misconception!  I pleaded for them to re-do the test, but the doctor confirmed the diagnosis to be correct and that unfortunately on top of that, I had the most aggressive form- I have never been one to do things by half! 

We were sent home later that day without the person I once was; I now had to learn a new way of life and a new daily schedule of medications, hydrotherapy, physiotherapy, rest, repeat. 

After diagnosis, I was losing weight rapidly. The consultant said it was the JIA so put me on sugary milkshakes, but I continued to lose weight and was always thirsty, tired, and constantly needing the toilet. My nan, who was a nurse, told my mum to get me checked for Diabetes and on the very day I had that blood test my mum got a call to say “get Melody to the hospital” she has type 1 diabetes. In the space of 2 months, I had 2 diagnoses to deal with. 

School was difficult, some of my friends did not understand why I had to use the lift or could not do P.E anymore and I missed a lot of school as a child, mainly due to pain. 

I remember going to South Sea and we were walking down the pier, my mum propping me up and I joked about the OAPs being faster than me; we laugh about it still, but deep down it was hard to see, I was grieving for my old life and wanted it back. 

As the years went on, I managed to go into Remission once, then left school and tried college. I managed to get qualifications in Beauty Therapy but unfortunately had to give it up due to operations. The damage I have now, after 23 years, is irreparable and in combination with other health conditions, is often debilitating- however, the advancement in modern medicines which prevent long- term damage to joints means that thankfully nowadays children and young people should not have to experience what I have been through.  

With all this being said, I wouldn’t ever change it, I have the best husband in the world and 2 beautiful girls, which I didn’t think was possible. I’m living my life the best way I can and I’m okay with that. 

Having a diagnosis like this isn’t the end of the world and the medication available now is second to none. Living with JIA or RA is hard, and it will fight you every step of the way but if you continue to fight it back you can still do the things you enjoy, with just a bit of extra care and planning and knowing your limits. Don’t let it control you, take control. There’s life after diagnosis and I’m proof of that. 

I wish anyone newly diagnosed or a veteran like me the best in life ✌🏼 

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I am Haider Khan and I am 17 years old. My sister was diagnosed with JIA when she was 9 years old. Before she became unwell over a year and a half ago, she was very active. The pain in her joints from her JIA causes her many difficulties and she is unable to be as active as she once was.

Before her diagnosis, she had been in a lot of pain since the start of the year and it was only until after 7 long months of scans and tests that she was able to begin receiving treatment through steroid medication and injections to help control her JIA.

It was an incredibly tough time for our family. We were all confused and scared as we were unsure of how we could soothe the aches and pains in her joints and emotionally support to try to make things better for her.

Despite the turmoil we felt in the beginning, things are better for her now that she has her treatment, although it still takes a toll upon us all as a family.

Everyday is different for us. Some days she will feel alright whilst other days things are more challenging for her, especially when she has a flare, which stops her from walking for too long or doing simple tasks without feeling a sharp pain in her joints, which makes the most basic things such as going to school or playing with friends hard for her.

Seeing her in this type of constant discomfort and pain is really hard for me because I want to try my best to help her feel better even if sometimes it’s something I can’t help with or solve by simply making her laugh and distracting her from her pain but regardless, as a family we all do our best to take time off of our work and studying to spend lots of time with her so she doesn’t feel alone in this. Her pain is our pain, and we do our best to show our support for her and make her feel better, be it through taking her on fun days out, relaxing at home and playing board games or just sitting down and talking about it, even if it is hard for us sometimes. 

JIA has affected all of our lives and caused us lots of hurt and worry, but it has also created a stronger bond and brought us closer together as a family. We all face this together. We all fight this together and we will get through this together. 

#ThisIsJIA. 

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New for 2024, NRAS has partnered with event specialist Run for Charity to allow us to offer guaranteed places in over 700 events throughout the UK. Some of the most popular ones are featured below but click the link below to search for your nearest.  

Web link

Inflatable 5k Events

Get ready to bounce your way through The World’s BIGGEST and most EPIC Inflatable 5k obstacle course. Jump, slide and bounce your way to the finish line like never before. Located throughout the UK.

Event, on 19 May 2024

Great Bristol Run Half Marathon

Each year, thousands of runners push their perseverance and passion to the limit and take on the super-scenic 10k and half marathon routes at the AJ Bell Great Bristol Run. If stunning views, inspiring history and graffiti murals are your thing, then the Great Bristol Run is right up your street. But it’s not just […]

Event, on 28 Jul 2024

Hillsborough Castle & Gardens Running Festival Half 

These ROAD CLOSED races will start and finish within the beautiful Grounds of Hillsborough Castle, before heading out onto the surrounding rural roads of Hillsborough and taking in historic attractions in the local area such as Hillsborough Fort and Hillsborough Lake, and finishing with a lap of the Gardens before crossing the finish line in the event […]

Event, on 12 Oct 2025

Royal Parks Half Marathon

This is the most spectacular half marathon that central London has to offer – it is a unique and inspiring event. The route takes in some of the capital’s world-famous landmarks, on closed roads and within four of London’s eight Royal Parks – Hyde Park, The Green Park, St James’s Park and Kensington Gardens.  Once you’ve […]

Event, on 6 Oct 2024

Great Scottish Run Half Marathon

With a city centre start and finish, the AJ Bell Great Scottish Run is a celebration of everything that makes Glasgow truly great: inspiring urban architecture, green spaces, history, music, strength, spirit and, of course, great people, personality and humour. Thousands of runners take part each year to challenge themselves and to raise money for […]

Event, on 6 Oct 2024

Cardiff Half Marathon

The Cardiff University Cardiff Half Marathon has grown into one of the largest and most exciting road races in Europe. It is Wales’ largest mass-participation and multi-charity fundraising event and the second largest half in the UK.  Its flat, fast course passes all the city’s most breath-taking scenery and iconic landmarks including Cardiff Castle, the Principality Stadium, Civic […]

Event, on 13 Oct 2025

Oxford Half Marathon

This awesome course is fast and flat, it proudly guides runners through the pristine and winding streets of Oxford in all its historic delight. The Oxford Half Marathon begins in the centre of the city and winds past  Old Marston village, the River Cherwell and onto the very impressive Lady Margaret University Hall, the finish […]

Event, on 16 Nov 2024

Run Alton Towers – Kids Race

Come and join us at Run Alton Towers Kids Race at the UK’s largest theme park on Saturday 16th November 2024. You are guaranteed a great day out with theme park entry and access to all the rides included in your entry!!  Open to kids of all ages and adults are more than welcome to […]

Event, on 16 Oct 2024

Chase the Moon – Battersea 5k

Battersea Park is one of London’s most picturesque parks and has been a favourite course for those wanting to run a PB! The course is totally flat, offering the perfect opportunity to push yourself to a personal best. Starting and finishing at the Parks Bandstand this course laps the park making it easy to follow […]

Event, on 4 Dec 2024

Santa in the City – London

You will then run along the South Bank, continue over Southwark Bridge, pass the Tower of London and Tower Bridge and then head through the City to the finish, where you started from, in front of the Tate Modern, completing a truly iconic route  No previous experience is needed for a 5k like this. The […]

Event, on 5 Dec 2024

Santa in the City – London

You will then run along the South Bank, continue over Southwark Bridge, pass the Tower of London and Tower Bridge and then head through the City to the finish, where you started from, in front of the Tate Modern, completing a truly iconic route  No previous experience is needed for a 5k like this. The […]

If you would like to contact the Fundraising team before signing up to a walk or trek please email fundraising@nras.org.uk or call us on 01628 823 524.

The post Runs appeared first on JIA.

Blog by Nicola Goldstone

For those living with Juvenile Idiopathic Arthritis (JIA), myths such as “children can’t get arthritis”, “you always grow out of it”, “you were fine yesterday, so you can’t feel that bad today”, can be upsetting to hear as well as frustrating to constantly correct. So, for this year’s JIA Awareness week, we aimed to become ‘Mythbusting superheroes’ and to put those misconceptions to bed, instead highlighting what it is really like to have Juvenile Idiopathic Arthritis. But we couldn’t do it alone!

JIA Superheroes from around the UK, tweeted, re-tweeted, posted, and shared their own photos and videos to illustrate their experiences of JIA misunderstandings with our hashtag #BustingJIAMyths. For example, Megan Bennett, 17, from Bristol, posted a new video every day on her Instagram account, explaining how the condition can fluctuate, meaning good days and bad days… and some really bad days; how it is wrong to think that symptoms are only felt in the winter when actually they can affect you all year round; that joint pain is the only symptom when in fact there are many others including swollen joints, stiffness and restricted movement, fatigue and loss of appetite.

Fitness coach Isaac from Versus Limits Coaching, wanted to bust the myth that children can’t have arthritis- he was diagnosed at 11 and explained how exercise helped him to feel that he had taken back control of his body and improved both his mental and physical health. Whereas Pam Duncan-Glancy MSP for the Glasgow area, shared how her mother was told it was just ‘growing pains’ before she was finally diagnosed with JIA. You can watch both of their videos on our JIA-at-NRAS YouTube channel.

The #JIAMythBusterQuiz

Our #JIAMythBusterQuiz, a 7-question quiz designed to bust the most common JIA myths and to better explain the condition, was taken by over 500 people over the course of the week. It is still available on our JIA-at-NRAS website so if you haven’t already, go and check it out! In fact, encourage friends, family members, teachers, colleagues to take it! Raising awareness of Juvenile Idiopathic Arthritis will ensure that children get a correct diagnosis earlier; that they get the support and access to services that they need; reduce the feelings of isolation they may feel for lack of understanding and encourage funding of new research into better ways to diagnose and treat the condition.Web linkClick here to take the #JIAMythBusterQuiz now!Give our #JIAMythBusterQuiz a go and share with your friends and family.

To find out more about what we have coming at JIA-at-NRAS, follow our JIA social media on Facebook, Twitter and Instagram. You can also keep checking our website for everything specific to JIA.

The post A look back at JIA Awareness Week 2023 appeared first on JIA.

Latest news on Covid 19 Vaccinations and Anti-Viral treatments for Children and Young people with Paediatric Rheumatological conditions.

As you will be aware, there have been lots of developments around the vaccination roll out and some new anti-viral treatments. You may like to know how this affects your child or young person.

• The vast majority of children and young people with paediatric rheumatological conditions like JIA are now being treated like the rest of their peers because they are not considered at any greater risk and can follow the standard medical advice for children their age. For most of those aged 12-15 this means they will be offered 2 doses of vaccine.
• For some children and young people on certain medications/doses, a 3rd dose of the vaccination (a full dose not a booster dose) and then a 4th booster dose are being offered. This will usually be at the discretion of the patient’s GP (sometimes with input from specialist teams) and will be according to rules laid out in a document called the ‘green book’ which all health professionals have access to.
• There are some new anti-viral treatments (anti viral monoclonal antibody treatments or ‘MAb’s) that are being used now for those at the highest risk of complications from Covid 19 or severe disease. In children and young people, any cases where these may be needed would be referred to a specialist team including Paediatric Infectious Disease Specialists for assessment. It is thought to be highly unlikely that children and young people with paediatric rheumatological conditions would require these as in general they are not very unwell with Covid.
  

Covid 19 Vaccine Update for 5-11 year olds

For some children in this age group who are on certain medications/doses, 2 doses of the Pfizer-BioNTech vaccine will be offered (these are smaller doses than the adult doses).These are to be given at least 8 weeks apart. This will usually be at the discretion of the patient’s GP (with input from specialist teams) and will be according to criteria laid out in a document called the ‘green book’ which all health professionals have access to.

If you wish to see a table with more detailed information about doses, eligibility and timing across the different age groups you can follow this link here.

You can find further information about vaccination and some useful guides for children and young people here and if you have specific concerns about your own individual child/young person please speak to your paediatric rheumatologist team for further advice.

• COVID-19 Vaccination resources for Child and Young People (GOV.UK)
• COVID-19 Resources for Parents and Carers (RCPCH)

_{February 2022}

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How to say it?

My-co-fenno-late moffet-ill

Other names

Cellcept

Type of JIA

Uveitis associated with JIA

How is it taken?

Tablet; liquid

How often?

Twice daily

How long for?

Long term – to maintain control of uveitis for at least two years

How soon does it start working?

Six to 12 weeks

Background

Mycophenolate is used to control uveitis and often in addition to another medication such as methotrexate or a biologic DMARD. It is not used for control of arthritis.

Precautions

Mycophenolate may cause bloating or abdominal pain when started in some people, which is why the dose is gradually increased over two to three weeks to a full dose. Other side effects are often minor and your child’s healthcare team will share information with you.

It is important to exclude pregnancy in females of child-bearing potential before treatment—two pregnancy tests eight to 10 days apart are recommended. Women should use at least one method of effective contraception before and during treatment, and for six weeks after discontinuation — two methods of effective contraception are preferable. Male patients or their female partner should use effective contraception during treatment and for 90 days after discontinuation.

Blood tests

As with methotrexate, blood tests are performed to monitor for early signs of any effects on the blood and liver. A change in the test result may not be due to the drug but is often due to an infection that may be obvious or not.

Blood tests are performed every two to four weeks for the first few months and then stretched out to every two to three months if there have been no problems.

Vaccinations

Please see methotrexate (page 50) and speak with your child’s healthcare team. In general, ‘live’ vaccines are avoided with this medication.

Other medicines

If your child is taking either the antibiotic rifampicin, or the antiviral acyclovir, their doses may need adjusting. Please check with your child’s healthcare team.

Alcohol

There are no specific associations of increased risk of toxicity with alcohol consumption when taking this medication

Article

Eye Health

Children and young people with Juvenile Idiopathic Arthritis (JIA) can develop inflammation in their eyes as well as their joints. This is called uveitis (you-vee-eye-tis). It tends to affect the children’s eyes over a long time (chronic) and mainly involves the front part of the eye. The number of children/young people with JIA who develop uveitis is 10-30%.

The post Mycophenolate mofetil appeared first on JIA.

How to say it?

Le-flu-noe-mide

Other names:

Arava

How is it taken?

Tablet

How often?

Once daily

How long for?

Long term

How soon does it start working?

After several weeks

Usage

Leflunomide is sometimes used as a valuable alternative to methotrexate, especially when there is methotrexate-associated nausea. Although it does not cause nausea, in a small number of patients it may cause some diarrhoea. This stops on cessation of the drug. Very rarely, it may cause numbness or tingling of the hands. It works in a similar way to methotrexate and blood monitoring is similar, too. Your team will advise you fully on this.

Precautions

Leflunomide should be avoided by anyone wanting to start a family and anyone whose blood cell counts are particularly low.

Blood tests

As for methotrexate, above.

Pregnancy

Anyone taking leflunomide who is sexually active should take effective contraception during treatment and for at least two years afterwards, in the case of women, or at least three months, in the case of men.

The post Leflunomide appeared first on JIA.