Riitaj's story

Riitaj was 2 years and 7 months old when she first showed inflammation of the knee joints.

We were living in state of Qatar at the time, and she woke up one morning crying because of pain in her knees, and she couldn’t come out of her bed as usual. Her knees were so swollen, we took her to the A&E in the local hospital (in Doha) and the doctor who saw her advised us to give her painkillers, and also referred us to the specialist paediatrician who in turn referred us to the rheumatology department in the main hospital. While we were waiting for the referral to go through, Riitaj had a bad cold with a high temperature, so we took her to the Children’s Emergency Section in the hospital, and the paediatrician checked Riitaj over, and spotted Riitaj’s swollen knees. We told her we are waiting for an appointment from the hospital for this, but she made a phone call to the Rheumatoid Arthritis desk and secured an appointment within four days.
Once we saw the specialist she identified her condition and send us straight away for the eye test, and blood test. 

Riitaj was prescribed Naproxen syrup twice a day, with Methotrexate tablets once a week, and steroids and folic acid both taken 6 days a week. Added to that, at a later stage, a weekly Etanercept injection was prescribed.

The time from when Riitaj’s knees were swollen, to seeing the specialist was really hard as we didn’t really know what is going on, or why her knees are swollen. We were far from home, and not over confident in the health care system, and any reassurance was lacking. It was painful and sad to see her when she couldn’t reach out for her toy because she couldn’t walk to get it, and when she did manage to walk she used the furniture as an aid. It was truly a heart-breaking time for us, and her illness affected me on my professional level, as I found it very hard to concentrate on my work.

Ritaaj has always been a very happy and active child, and we consider her a very lucky child as with effective treatment her JIA hasn’t stopped her from doing the things she loves most, like walking in the woods or running around either indoors or outdoors.

For more information about the different types of Juvenile Idiopathic Arthritis, please see our About JIA page.

* Riitaj is happy for us to share her story. The photo is of Riitaj.

Charlotte's story

Charlotte is 11. She has poly-JIA.

One morning, when she was 5, she woke with a sore swollen knee. It didn’t get better so, after 3 days, she was admitted to hospital with a suspected infection. After that was ruled that out, Charlotte had numerous hospital appointments, tests and scans. Her ankles then also became inflamed and she was unable to walk. It was terrifying for Charlotte and her parents.

It took about 8 weeks before Charlotte was diagnosed with JIA. She also has uveitis, and has lost the sight in her right eye as a result. She has had multiple joint injections, and is now on humira. For the past year, her JIA has been largely under control.

She takes everything in her stride, but she has struggled with friendships because of her JIA. She also pushes herself very hard to keep up so people think she’s fine, but then she crashes and burns later on which is hard.

Charlotte’s JIA affects the whole family, and the consequences of her uveitis will affect her for the rest of her life. But she doesn’t see it that way, keeps positive, and has recently been awarded a music exhibition at senior school.

For more information about the different types of Juvenile Idiopathic Arthritis, please see our About JIA page.

* Charlotte is happy for us to share her story. The photo is from stock and is not Charlotte.

Amelie's story

Amelie is 14. She has JIA.

It took about 4 months to receive a diagnosis when she was 18 months old, and she started treatment with methotrexate and naproxen.

Over the years she had repeated steroid injections before alternative treatments were introduced, and she is now on four medications to control her JIA. The disease is now largely controlled, but she has erosion in her hands, feet and jaw, as well as skeletal deformities as a result of the JIA being uncontrolled for so long.

She has missed a lot of school, and has a limited lifestyle due to the JIA, and is very fatigued.
She had major ankle surgery last year, fixing the joint in place to prevent further flare-ups and damage.

Her mum Caroline writes, “I don’t know what parenting of an average child feels like and I plan my life according to Amelie. I became a full-time carer and live in fear of the phone going. I used to go daily to school when she was on the meds as she didn’t tolerate them well and would always vomit. My life is Amelie and Amelie’s life is arthritis. We have planned everything around this disease...even down to planning for uni locally so she can stay at home and I can help her through her bad days.”

For more information about the different types of Juvenile Idiopathic Arthritis, please see our About JIA page.

* Amelie is happy for us to share her story. The photo is from stock and is not Amelie.

Yasmin's story

Yasmin* is 7. She has extended-oligo JIA.

She was 15 months old when her knee first appeared swollen. X-rays showed it was full of fluid, which was drained, but her knee swelled again soon after. Further tests, including a bone marrow biopsy, ruled out infection and leukaemia. Yasmin was diagnosed with JIA and started treatment.

Once the methotrexate was working it was a relief, apart from a weekly injection and monthly bloods all was good, Yasmin could keep up with her friends and was like any other child her age. She had a couple of flares but joint injections, physio and increasing methotrexate controlled them quickly for 3 years. Unfortunately, her JIA has progressed and is currently untreated. She is in pain and has reduced mobility, and her JIA is affecting her lifestyle and the health and wellbeing of her family members.

For more information about the different types of Juvenile Idiopathic Arthritis, please see our About JIA page.

* Yasmin (not her real name) is happy for us to share her story, but has asked us not to use her real name. The photo is from stock and is not Yasmin.

Waitrose Community Matters

We are delighted that Juvenile Arthritis Research is part of the Waitrose Community Matters scheme in Tonbridge throughout March 2019.

Whenever you shop at Waitrose Tonbridge this month, collect a green token and put it in the JAR box as you leave. At the end of the month, each of three charities receives a share of £1000 based on the number of tokens they receive in 'votes'.

So, if you are in the area, please do pop in and support us.

One year

Did you know that Juvenile Arthritis Research is one year old? 

It has been an incredible year and we are truly grateful to all those individuals and organisations that have supported us in so many ways...

Families that have shared their JIA stories with us, organisations and individuals in the medical and research fields that have worked with us, the media that have shared news about the JAR project, fundraisers who have raised vital funds for JAR, our trustees who have helped keep our focus on the vision of finding a cure for juvenile arthritis and those children with JIA who we are in contact with who inspire us every single day.

Charity of the Year

Juvenile Arthritis Research were delighted to hear that we have been chosen as one of two Charities Of The Year by Woodlands Primary School in Tonbridge. Children were asked to nominate a charity to support. After carefully considering all the nominations, the School Council (made up of one child from each class) voted to support Juvenile Arthritis Research (JAR), alongside the other charity they are supporting, the NSPCC.

Woodlands school told us, “The School Council read all the letters and had a good discussion as to which charity we felt we would like to support this year. As a group we were very inspired by the reasons that were given by all of the children. However, after a vote we have decided to support the JAR (Juvenile Arthritis Research) Project.”

JAR has two aims: first, to find a cure for juvenile idiopathic arthritis, and secondly to increase awareness of the condition. Juvenile arthritis affects 1 in every 1000 children and young people – that’s around 15,000 children under the age of 16 in the UK. It is a crippling and painful autoimmune disorder that attacks the joints causing pain, inflammation, discomfort, reduced mobility and disability. In some cases it can also attack the eyes causing uveitis which can lead to permanent sight loss if left untreated.

As well as researching a cure for juvenile arthritis, JAR is also raising awareness of the condition because early diagnosis leads to better clinical outcomes. Yet for around 5% of children with JIA, diagnosis took more than 3 years from the point of first contacting a health professional. Increasing awareness will help improve diagnosis times, helping to improve the health of children with JIA.

Mrs Priestley, headteacher of Woodlands Primary School said “We hope that supporting this charity will raise awareness that children and young people get arthritis.”

We are so touched that Woodlands Primary School has chosen to support us as one of their charities of the year this year, and we look forward to working with them to raise awareness of juvenile arthritis and to find a cure for this painful chronic condition.

Age of onset

We undertook a short survey relating to the age of onset of juvenile idiopathic arthritis. Thank you to everyone who took part.

Here's a summary of findings.

“All I want for Christmas…”

Juvenile Arthritis Research is featured in Wellbeing News

"As we draw closer to Christmas, most children are writing letters to Santa with a wishlist of toys and presents that they look forward to opening on Christmas day. For many children with chronic and painful conditions such as juvenile arthritis, their hopes are different. Six-year old Trinity is hoping for her arthritis to go away..."

We are excited to tell you that Trinity's story has been shared by Wellbeing News, helping to raise awareness that children and young people get arthritis. 

Wishing for a cure for Christmas

Juvenile Arthritis Research have been published in Good News Shared

"Trinity, aged 6, only wants one thing for Christmas..."
When the lovely people at Good News Shared heard about the one thing on Trinity's Christmas list, they contacted us and wrote up an article to help spread the word that children and young people get arthritis. We are committed to finding a cure for juvenile idiopathic arthritis, and doing all we can to help make her wish become a reality.

#Run250 finale

Just two weeks ago Alex started his #Run250 challenge. 

Today, he crossed the finish line at the Tonbridge Half Marathon with wife Lynnette bringing the total distance run to 250.8 miles in just two weeks. He has raised almost £1,000 so far which is simply amazing, but it would be fantastic to break that target. 

If you would like to support him you still can at www.give.net/Run250

He completed the final 13 miles today in a very respectable 2 hours 45 minutes, bringing his total running time to 55 hours and 55 minutes and an overall pace of a very impressive 13:23 per mile.

We cannot even begin to thank you enough, Alex and Lynnette - well done for all you have achieved.

Almost there - Run250

Alex and his wife Lynnette, with Trinity (aged 6, who has JIA).

Two weeks ago, Alex started his incredible #Run250 challenge where he was going to attempt to run 250 miles in just two weeks. His aim was to raise awareness that children and young people get arthritis, and to raise funds to support our work in finding a cure for the disease.

Well, his challenge comes to an end tomorrow at the Tonbridge Half Marathon where he will indeed complete the 250 miles as he runs alongside wife Lynnette. 

He has also almost reached his fundraising target, with a massive £900 raised so far, so thank you so much for your support. There is still time to donate if you'd like to at www.give.net/Run250, and please continue to spread the word about what Alex is doing to your friends and family. 

And he's off! #Run250

And he's off! Alex has started his #Run250 challenge where he will be running 250 miles in a period of just 2 weeks. 

On his first day he completed a whopping 22 miles! 

Thank you to everyone who has pledged their support so far. Do take a look at www.give.net/Run250 for more information and help spread the word about what Alex is doing to your friends and family. 

The great thing about Alex's Run250 challenge is that it is helping to raise awareness of JIA. Many people remain unaware that arthritis can affect children. So please do hit those 'share' buttons and help spread the word. 

Boys' Brigade

I was invited to speak about the Juvenile Arthritis Research project at our local Boys' Brigade recently.

It was great to have such an involved and attentive audience as I explained what juvenile idiopathic arthritis is, how it affects children and young people, and the current medications available to children with JIA. 

As well as raising awareness of JIA and the aims of the JAR project, hopefully some of the boys at Boys' Brigade will have gained an understanding of where a career in Science may take them. Who knows, perhaps it will be one of these youngsters searching for a cure for illnesses in future.  

Running 250 miles to find a cure for juvenile arthritis

Alex Shrimpton (aged 26), a member of Hope Church Tonbridge, is running a phenomenal 250 miles over two weeks to raise awareness of juvenile arthritis, and to raise money to help find a cure for the horrible disease.

From 23 September to 7 October 2018, Alex will be completing an average of 18 miles every day in addition to his job as a carer for which he commutes to Winchester. His run will culminate in the Tonbridge half-marathon on 7 October.

Alex is hoping to raise awareness of juvenile idiopathic arthritis (JIA) – a painful autoimmune disorder that affects around 15,000 children and young people under the age of 16 in the UK. JIA is not the same as either rheumatoid arthritis or osteoarthritis (which are more commonly associated with older people). Without adequate treatment, JIA can lead to other health conditions as the immune system attacks other organs, as well as permanent disability and long-term health implications.

At present, there is no cure for Juvenile Idiopathic Arthritis. All current treatments seek to reduce the symptoms of JIA, but are not a cure. Whilst these treatments have beneficial effects in reducing pain and inflammation, and provide some protection against long-term joint damage, they come with their own side-effects and impinge on long-term health of children taking these medications. In around half of all cases, children go into spontaneous remission. But in the other half, they are confined to taking powerful drugs long-term, with all the side-effects and complications that causes.

Alex will also be raising money for Juvenile Arthritis Research, a charitable project aimed at finding a cure for the disease. With the support and endorsement of leading academic researchers, the JAR project works independently to analyse data and information from a wide range of different scientific disciplines and research fields. By bringing together the disparate sources of information, they believe that they will be able to piece together the clues necessary to fully understand the disorder and develop a cure.

Alex says: “I have chosen to run for Juvenile Arthritis Research, as I am friends with a family who have the bravest little girl, Trinity, who is 6 years old and has had JIA since she was two. Unfortunately, however, she needs ongoing chemotherapy treatment to enable her to walk. Trinity still has a long way to go in her treatment but there are thousands of children left to help.  If anyone can help donate I would be most grateful, regardless of how big or small.”

Richard Beesley, the founder of Juvenile Arthritis Research, says: “When Alex told us he wanted to run 250 miles in just two weeks to raise awareness and much-needed funds for our research, I was amazed. Juvenile arthritis is a horrible disease, and there are thousands of children and young people suffering from its effects. We are committed to finding a cure, and are so grateful to Alex for taking on this incredible challenge for us.”

Please help Alex support Juvenile Arthritis Research as they search for a cure for juvenile arthritis - a crippling and painful autoimmune disease. You can give online at www.give.net/Run250. You can also follow his progress on the Juvenile Arthritis Research social media channels.

Support us

Support us

Secure online giving at give.net