Juvenile Arthritis Research’s Post

Uveitis is inflammation inside the eye that can happen in around 1 in 5 children who have Juvenile Idiopathic Arthritis. Regular eye checks are vital so that uveitis can be detected and treated promptly to avoid long-term damage. Your eye check may be with an ophthalmologist (specialist eye doctor), an orthoptist (vision and eye health specialist) or an optometrist (specialised hospital based optician). They will be able to check your sight as well as look inside the eye for inflamed cells using their special microscope (called a slit lamp). This doesn't hurt and usually only takes a few minutes. So if your child has juvenile arthritis, make sure they are regularly attending their eye appointments too, even if there are no obvious symptoms of uveitis and even if their juvenile arthritis is well-controlled. You can find out more about uveitis on our website and in our "My JIA" booklet at www.jarproject.org/myjia #JIA #JuvenileArthritis #JuvenileIdiopathicArthritis #JuvenileArthritisResearch #Kipo #Arthritis #ChildhoodArthritis #ChronicIllness #AutoimmuneDisease #JARProject #JIAWarrior #ArthritisAwareness #charity #CharitableCause #NonProfit #Donate #Support #causes #fundraising #philanthropy #KidsWithArthritis #KidsGetArthritisToo #DontBeAloneWithJIA #InstaCharity #RaiseAwareness #ThinkJIA #AwarenessIsEverything #PaediatricRheumatology #uveitis #eyes

One day to go! Our new resource launches tomorrow. It has been developed in response to a huge need from families. Time and time again, we heard that the families of children diagnosed with Systemic JIA (also known as Still’s Disease) had not received any information about their child’s condition at diagnosis. They hadn’t been given any resources to let them know about the condition or the signs and symptoms of Macrophage Activation Syndrome (MAS) which is a rare but serious complication that can affect those with Systemic JIA / Still’s Disease. With the help of those families, children and young people, together with the expertise of doctors and medical professionals, and the dedication of our volunteers, we have created resources to fill that gap. Because at Juvenile Arthritis Research, we are never standing still. We are always listening to what families tell us. We are experiencing the issues ourselves as parent/carer volunteers. We step up and do what is needed because we need to keep moving forward towards a world where no child has to suffer from arthritis. One day we will get there but, in the meantime, we want to make life better for those with JIA and equip them with the information and resources they need. Tomorrow is that next step with the launch of this much-needed resource. #JIA #JuvenileArthritis #JuvenileIdiopathicArthritis #JuvenileArthritisResearch #Arthritis #ChildhoodArthritis #ChronicIllness #AutoimmuneDisease #JIAWarrior #ArthritisAwareness #charity #CharitableCause #JIAVIP #Donate #Support #JIAVIPResearchPanel #fundraising #KidsWithArthritis #KidsGetArthritisToo #DontBeAloneWithJIA #InstaCharity #RaiseAwareness #ThinkJIA #AwarenessIsEverything #PaediatricRheumatology #JIAResearch #PPIE #sJIA #StillsDisease #SystemicJIA

It was a delight to receive this photo from Seth's mum showing Seth receiving his Little Box of Hope support pack from Juvenile Arthritis Research. Seth's mum told us "I just want to say thank you so much for Seth's pack. So much info and he loves Kipo." There is a reason why the boxes are called a Little Box of Hope and it is because at that worrying and overwhelming time when you have a child diagnosed with Juvenile Idiopathic Arthritis (JIA), it can be hard to imagine what the future will look like. We know that with earlier diagnosis, and getting started promptly on treatment, we can achieve better outcomes for children with JIA. Once the right medication and treatment is underway, many children can lead full and active lives as they grow up with JIA. We want to remind families of that hope as well as letting them know that we are here for them. Because when families connect with us by requesting a Little Box of Hope pack, it is just the beginning. Our volunteers can then support them through their JIA journey as much as they need with 1:1 support, a peer support network, help with any challenges at school and so much more. So if your hospital doesn't yet know about us and what we offer families completely free of charge, please do let them know and ask them to get in touch. We have lots of signposting materials available to hospitals too. www.jarproject.org/hope #JIA #JuvenileArthritis #JuvenileIdiopathicArthritis #JuvenileArthritisResearch #Kipo #Arthritis #ChildhoodArthritis #ChronicIllness #AutoimmuneDisease #JARProject #JIAWarrior #ArthritisAwareness #charity #CharitableCause #NonProfit #Donate #Support #causes #fundraising #philanthropy #KidsWithArthritis #KidsGetArthritisToo #DontBeAloneWithJIA #InstaCharity #RaiseAwareness #ThinkJIA #AwarenessIsEverything #PaediatricRheumatology

We loved seeing this fantastic compilation of photos from Iris raising awareness that young people can get arthritis too with one of our "I'm not too young for arthritis posters". Awareness of Juvenile Idiopathic Arthritis (JIA) is low. Our recent research showed that only 19% of the UK population knew that children under the age of 5 could get arthritis and only 40% knew that children under the age of 16 could get arthritis. We are working hard to improve earlier diagnosis through improved awareness with our #ThinkJIA campaign amongst frontline health professionals, schools and communities. For too long the word "arthritis" has been associated with the elderly and this misconception that it only affects older people has led to delays in diagnosis, misdiagnosis, treatment not starting soon enough, stigma and lack of understanding for those affected by JIA. It is thanks to young people like Iris and the amazing children and young people who helped to raise awareness with our posters for WORD day, that will amplify our impact by raising awareness in your own social circles and communities too. You can find out more about raising awareness on our website at https://lnkd.in/eFUraKip and on our WORD day hub at www.jarproject.org/word Sharing any of our social posts and videos can also help raise awareness. Thank you to everyone who already does this. It is making a difference to the lives of those with JIA! #JIA #JuvenileArthritis #JuvenileIdiopathicArthritis #JuvenileArthritisResearch #Kipo #Arthritis #ChildhoodArthritis #ChronicIllness #AutoimmuneDisease #JARProject #JIAWarrior #ArthritisAwareness #charity #CharitableCause #NonProfit #Donate #Support #causes #fundraising #philanthropy #KidsWithArthritis #KidsGetArthritisToo #DontBeAloneWithJIA #InstaCharity #RaiseAwareness #ThinkJIA #AwarenessIsEverything #PaediatricRheumatology

ONE MONTH TO GO... until #WORDday2024 WORD day is World yOung Rheumatic Diseases day which happens on 18th March each year. It is the biggest date in the calendar for raising awareness of Juvenile Idiopathic Arthritis (JIA) and other rheumatic conditions in children and young people. As WORD day ambassadors and part of the international WORD day organising committee, we are incredibly excited about WORD day this year. You can find out more about WORD day on our WORD day hub on our website at www.jarproject.org/word You'll find downloadable posters to print and share on your own social channels to raise awareness that children and young people can get arthritis too. Raising awareness is the single biggest thing that any of us can do to make a difference to those living with JIA. That's why it is one of our core aims at Juvenile Arthritis Research and why we run our #ThinkJIA awareness campaign all year round taking some of the key messages from WORD day about the importance of awareness and early diagnosis to key audiences like schools, communities and GPs. We'll be sharing ideas of how to get involved over the coming weeks as well as more details of the upcoming WORD day webinars. Find out more about WORD day at www.jarproject.org/word and help change the world for children and young people with JIA. #JIA #JuvenileArthritis #JuvenileIdiopathicArthritis #JuvenileArthritisResearch #Kipo #Arthritis #ChildhoodArthritis #ChronicIllness #AutoimmuneDisease #JARProject #JIAWarrior #ArthritisAwareness #charity #CharitableCause #NonProfit #Donate #Support #causes #fundraising #philanthropy #KidsWithArthritis #KidsGetArthritisToo #DontBeAloneWithJIA #InstaCharity #RaiseAwareness #ThinkJIA #AwarenessIsEverything #PaediatricRheumatology

We received this wonderful photo of 5 year old Sumayya receiving her Little Box of Hope pack. These free information and support packs are available to families in the UK who have a diagnosis of Juvenile Idiopathic Arthritis (JIA). We have two versions of the Little Box of Hope pack - one is designed for those aged under 10 and the other is for those aged 10 and over that we refer to as a 'teen pack'. Receiving this vital information when first diagnosed with JIA has been a lifeline to many families who had nowhere else to turn. Once you've received a Little Box of Hope from us, you'll also be invited to join our peer-to-peer support network and hear about our ParentZoom meetings too. It is thanks to everyone that has donated to support Juvenile Arthritis Research or has fundraised to support our work, that makes it possible for us to be here for those affected by JIA - Thank you! For those in the UK with a diagnosis of JIA, you can request your Little Box of Hope pack at www.jarproject.org/hope We love seeing these fabulous photos of your children receiving their packs - please do keep sending them in. If you've sent your photo in but haven't seen it yet on social media, please keep an eye out over the coming weeks. #JIA #JuvenileArthritis #JuvenileIdiopathicArthritis #JuvenileArthritisResearch #Kipo #Arthritis #ChildhoodArthritis #ChronicIllness #AutoimmuneDisease #JARProject #JIAWarrior #ArthritisAwareness #charity #CharitableCause #NonProfit #Donate #Support #causes #fundraising #philanthropy #KidsWithArthritis #KidsGetArthritisToo #DontBeAloneWithJIA #InstaCharity #RaiseAwareness #ThinkJIA #AwarenessIsEverything #PaediatricRheumatology

How our Versus Arthritis Helpline is a lifeline for people living with #arthritis https://lnkd.in/eBWK6sJj #arthritisawareness #VersusArthritis #charity #notforprofit #painmanagement #osteoarthritis #rheumatoidarthritis #fibromyalgia #psoriaticarthritis #gout

"Be the change you want to see in the world." A well known quote and one that we live by at Juvenile Arthritis Research. If it's needed, we do it. If it needs to change, we do our best to make it happen. If there is a gap that exists, we fill it. Juvenile Arthritis Research was started in 2018 to fill the gaps that remained after decades of very little change in terms of awareness of Juvenile Idiopathic Arthritis (JIA) and the huge lack of support for families. We wanted to ensure that researchers stayed focused on what matters most to families - to one day find a cure for JIA. As well as our own research projects, we work with universities, hospitals and other organisations from around the globe to bring us closer to a world where no child has to suffer from arthritis. Because that is a change we all want to see happen. And we believe that everyone can do something to make a difference. Whether it is raising awareness of JIA in your own community and within your networks, raising funds to support our vital work, or being an ambassador for Juvenile Arthritis Research by telling others about us and what we do to support families and bring about change, it is within each person's ability to make a difference. Let's be that change together to change the world for children with JIA. https://lnkd.in/eMbdwU8s #JIA #JuvenileArthritis #JuvenileIdiopathicArthritis #JuvenileArthritisResearch #Kipo #Arthritis #ChildhoodArthritis #ChronicIllness #AutoimmuneDisease #JARProject #JIAWarrior #ArthritisAwareness #charity #CharitableCause #NonProfit #Donate #Support #causes #fundraising #philanthropy #KidsWithArthritis #KidsGetArthritisToo #DontBeAloneWithJIA #InstaCharity #RaiseAwareness #ThinkJIA #AwarenessIsEverything #PaediatricRheumatology 

Today we stand with all those who have a rare disease for #RareDiseaseDay. Juvenile Idiopathic Arthritis (JIA) as a whole is not an official “rare disease” as it affects around 1 in 1000 children (though the most recent estimates are around 1 in 1,600). JIA is actually made up of a group of diseases sharing similar characteristics. If we look at each subtype of JIA in isolation such as Systemic JIA (sJIA) or any of the other types of JIA (polyarticular, oligoarticular, enthesitis-related, psoriatic and undifferentiated arthritis), the definition of rare disease would apply to each of those subtypes. Regardless of the official categorisation, we know that those with JIA face some of the same universal challenges affecting other rare diseases. -Lack of awareness that babies, children and young people can get arthritis leads to delays in diagnosis or misdiagnoses. -Receiving prompt and effective treatment is impacted by the delays in diagnosis. -Families of those affected by JIA often report the social and financial burden of having a long-term condition that many are not aware of. -The variability of living with JIA, which can sometimes be an “invisible illness” can lead to stigma and lack of understanding. -Research needs to be international to ensure that experts, researchers and clinicians are connected – something that we are passionate about to bring us closer to a cure for JIA. Let’s stand with the 300 million people worldwide who have a rare disease and let the world know that rare diseases matter! #JIA #JuvenileArthritis #JuvenileIdiopathicArthritis #JuvenileArthritisResearch #Kipo #Arthritis #ChildhoodArthritis #ChronicIllness #AutoimmuneDisease #JARProject #JIAWarrior #ArthritisAwareness #charity #CharitableCause #NonProfit #Donate #Support #causes #fundraising #philanthropy #KidsWithArthritis #KidsGetArthritisToo #DontBeAloneWithJIA #InstaCharity #RaiseAwareness #ThinkJIA #WordDay2024 #AwarenessIsEverything @rarediseasedayofficial

"JIA doesn't own me!" We were sent this fantastic video reel and are sharing it with kind permission from Aria's parents. It is a reminder to us all of how hard things can be at the start of the JIA journey, but that there is hope. With the right medication and treatment (including those all important physiotherapy exercises too!) it is the hope that our children can reach medicated remission and then hopefully one day unmedicated remission too like Aria. Aria you are an inspiration! There is a lot of research happening all across the globe to bring us closer to having the knowledge we need for personalised medicine where it would be possible to know right at the start of the JIA journey which medicine would work best for each child. When that comes to fruition, it will hopefully mean more children reaching medicated remission faster and further monitoring can be done to assess longer-term outcomes and those reaching unmedicated remission in the long-term too. Do sign up for the ENCA webinar happening in September to hear more about the research being done into this at https://lnkd.in/eiFaRWeH #JIA #JuvenileArthritis #JuvenileIdiopathicArthritis #JuvenileArthritisResearch #Kipo #Arthritis #ChildhoodArthritis #ChronicIllness #AutoimmuneDisease #JARProject #JIAWarrior #ArthritisAwareness #charity #CharitableCause #NonProfit #Donate #Support #causes #fundraising #philanthropy #KidsWithArthritis #KidsGetArthritisToo #DontBeAloneWithJIA #InstaCharity #RaiseAwareness #ThinkJIA  #AwarenessIsEverything #PaediatricRheumatology ENCA - Advocating for young people and families EULAR - European Alliance of Associations for Rheumatology