Juvenile Arthritis Research’s Post

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

Awareness of Juvenile Idiopathic Arthritis (JIA) is low. Low awareness leads to delays in diagnosis and treatment. As well as the misconception that arthritis only affects older people, there is another misconception that those with JIA have to overcome. Many people will think that the term ‘juvenile idiopathic arthritis’ relates only to childhood. Whilst it is true that symptom onset has to be before the age of 16 to be diagnosed with Juvenile Idiopathic Arthritis, the actual diagnosis of “juvenile” idiopathic arthritis remains for life and into adulthood. JIA does not get renamed to other forms of arthritis simply by reaching adulthood. It’s really important for those with JIA, and for GPs and other clinicians, to understand this so that people can get the right treatment and care if their arthritis flares in adulthood as they will be “an adult with JIA”. Please share to raise awareness! #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 #PaediatricRheumatology 

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

Our new Systemic JIA / Still's disease leaflet will be soon landing on doorsteps of those who have told us have this sub-type of JIA when they requested their original Little Box of Hope support pack. New requests for A Little Box of Hope will also include this information for those affected by this sub-type. This resource was developed in response to families and medical professionals telling us that patient-facing materials were needed when someone is first diagnosed with Systemic JIA / Still's disease. Before we began to develop the resource, we spoke to adults with the condition as well as children, young people and parents / carers of those affected by this subtype of JIA to find out what information they wanted to see included, what format the resources should be, and how the important messages about signs and symptoms of Macrophage Activation Syndrome (MAS) should be given. We also worked with doctors to ensure that the resource contained the key information that they wanted patients and families to know and then the resource went through further stages of checking and PPIE (patient and parent involvement and engagement) before being printed. At this stage, a small print-run has been done so that those receiving the resource this week will also have the opportunity to give feedback before a bigger print-run happens in future. We are very grateful to everyone involved in creating this much needed resource. Find out more on our dedicated Still's disease website at www.stillsdisease.uk #JIA #JuvenileArthritis #JuvenileIdiopathicArthritis #JuvenileArthritisResearch #Kipo #Arthritis #ChildhoodArthritis #ChronicIllness #AutoimmuneDisease #JARProject #JIAWarrior #ArthritisAwareness #charity #CharitableCause #JIAVIP #Donate #Support #JIAVIPResearchPanel #fundraising #philanthropy #KidsWithArthritis #KidsGetArthritisToo #DontBeAloneWithJIA #InstaCharity #RaiseAwareness #ThinkJIA #AwarenessIsEverything #PaediatricRheumatology #JIAResearch #PPIE

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

Because one day isn't long enough for raising awareness... Yesterday was #WORDDay2024 and so many of you have got involved in raising awareness that we're going to be continuing to share your fantastic photos today! WORD day is World yOung Rheumatic Diseases day that happens on 18th March every year to raise awareness of childhood rheumatic conditions such as Juvenile Idiopathic Arthritis (JIA). Raising awareness is the one thing that EVERYONE can do to help children and young people affected by JIA. Increased awareness improves earlier diagnosis. Increased awareness reduces feelings of isolation. Increased awareness improves understanding and reduces stigma. Increased awareness means that treatment can start sooner. Increased awareness leads to better outcomes for children with JIA. Increased awareness changes lives! 7 year old Willow has JIA and uveitis. She was diagnosed when she was just 18 months old. Here she is raising awareness to help others receive that all important prompt diagnosis. Thank you Willow - You are amazing! #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

The EOFY is fast approaching, and the Australian Thyroid Foundation (ATF) needs your support to continue to help you and future generations who may be living with an undiagnosed thyroid disorder. Statistics show 1 in 10 will be diagnosed during their lifetime. As there is well over 1 million Australians living with an undiagnosed thyroid disorder, the ATF needs to increase our services and awareness programs nationally to reach out and help improve patient outcomes. Education and resources for GPs and Healthcare Professionals are essential. Patients visit a GP to determine a diagnosis, so it is important GPs have the best resources to diagnose and treat a thyroid disorder. Once a diagnosis has been made, patients need the best support services and information during their thyroid journey, as you will know, if you have been diagnosed with a thyroid disorder. Thyroid Disorders can affect individual patients differently and as the Australian thyroid patient authority, the ATF need help to continue and greatly appreciate your support to do so. Please consider how you can help us to help you and others. Donations large or small or a Will Bequest will make a difference and will ensure we continue and improve our services: https://lnkd.in/gxb_63yQ #thyroid #ATF #charity #nonprofit #taxes #australianthyroid #willbequest #thyroidhealth

The EOFY is fast approaching, and the Australian Thyroid Foundation (ATF) needs your support to continue to help you and future generations who may be living with an undiagnosed thyroid disorder. Statistics show 1 in 10 will be diagnosed during their lifetime. As there is well over 1 million Australians living with an undiagnosed thyroid disorder, the ATF needs to increase our services and awareness programs nationally to reach out and help improve patient outcomes. Education and resources for GPs and Healthcare Professionals are essential. Patients visit a GP to determine a diagnosis, so it is important GPs have the best resources to diagnose and treat a thyroid disorder. Once a diagnosis has been made, patients need the best support services and information during their thyroid journey, as you will know, if you have been diagnosed with a thyroid disorder. Thyroid Disorders can affect individual patients differently and as the Australian thyroid patient authority, the ATF need help to continue and greatly appreciate your support to do so. Please consider how you can help us to help you and others. Donations large or small or a Will Bequest will make a difference and will ensure we continue and improve our services: https://lnkd.in/d7mqQgy #thyroid #ATF #charity #nonprofit #taxes #australianthyroid #willbequest #thyroidhealth

"Lettie's Little Box of Hope arrived today. Thank you so so much. It is wonderful." A big thank you to Lettie's family for sending us fabulous photos of Lettie receiving one of our Little Box of Hope packs. It means a lot to our volunteers to know just how helpful these packs are and how appreciated and needed they are. When Juvenile Arthritis Research first began 6 years ago, there was very little support available to families facing a diagnosis of Juvenile Idiopathic Arthritis (JIA). We set about to change that. With the help of a young volunteer who came up with the concept of A Little Box of Hope and the support of our volunteers and healthcare professionals, we created a pack that contains all the information you need at the start of your JIA journey and reassurance to know that you aren't alone. When someone requests a Little Box of Hope pack from us, it unlocks all our support services so they'll have access to our peer-to-peer network, our ParentZoom meetings, face-to-face events and any 1:1 support they or their school need. It's all made possible by our fantastic volunteers and those who donate and fundraise to support our work. Our Little Box of Hope packs are available to those with a diagnosis of JIA in the UK and can be requested at www.jarproject.org/hope We love seeing these wonderful 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