Juvenile Arthritis Research’s Post

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

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

TODAY is WORD DAY! (World yOung Rheumatic Diseases day) It is the most important date in the calendar for raising awareness that children and young people get rheumatic diseases too. Juvenile Idiopathic Arthritis (JIA) is the biggest rheumatic disease affecting children and young people. In the UK, there are an estimated 15,000 children under the age of 16 living with the condition. Around 1,000 children are diagnosed each year in the UK – that’s around 20 families a week that will hear the news that their child has arthritis. Some will have had to wait a long time for that diagnosis due to the lack of awareness that children can get arthritis too. Together we can change that by raising awareness of childhood arthritis this WORD day. By liking, commenting, and most importantly, sharing, our social posts today you can help raise that vital awareness of childhood rheumatic conditions such as JIA. Because awareness changes lives. Find out more at www.jarproject.org/word And don't miss this evening's WORD day webinar - you can sign up at www.wordday.org #ThinkJIA #AwarenessIsEverything #WORDDay #WORDDay2024 #ChildrenGetArthritisToo #ArthritisAwareness #JIA #JuvenileArthritis #JuvenileIdiopathicArthritis #JuvenileArthritisResearch #Kipo #Arthritis #ChildhoodArthritis #ChronicIllness #AutoimmuneDisease #JARProject #JIAWarrior #ArthritisAwareness #charity #CharitableCause #NonProfit #Donate #Support #causes #KidsWithArthritis #KidsGetArthritisToo #DontBeAloneWithJIA #InstaCharity #RaiseAwareness  #PaediatricRheumatology

💙 Join Us in the Fight Against Polycystic Kidney Disease (PKD) 💙 I am reaching out to share a deeply personal cause that is close to my heart. My 18-year-old stepdaughter, Chalese, has been bravely battling Polycystic Kidney Disease (PKD), specifically the rare and severe form known as Autosomal Recessive Polycystic Kidney Disease (ARPKD). PKD is a genetic disorder characterized by the growth of numerous cysts in the kidneys, which can lead to kidney failure and other severe health issues. There are two main types of PKD: 1. Autosomal Dominant PKD (ADPKD): Typically diagnosed in adulthood, affecting about 1 in 400 to 1,000 people globally. 2. Autosomal Recessive PKD (ARPKD): This rare form, affecting 1 in 20,000 children, can be detected in the womb or shortly after birth and often leads to severe complications early in life. ARPKD is particularly challenging, with more than half of children affected experiencing kidney failure by age 15 to 20. Despite these daunting challenges, Chalese continues to show incredible strength and resilience. We are committed to raising awareness and support for those affected by this disease. One significant way you can help is by participating in or donating to the Walk for PKD. This event is crucial for funding research and providing support to families affected by PKD. How You Can Help: • Walk with us: Join the Walk for PKD on Sept 21st in Salt Lake City at Sugarhouse Park at 8:30am. Join our team “Chalese’s Hope”. https://lnkd.in/gprprTuJ • Donate: Every contribution, no matter how small, makes a difference in the fight against PKD. Donate to team “Chalese’s Hope”. https://lnkd.in/gprprTuJ Together, we can make a difference. Thank you for your support! #PKD #WalkForPKD #ARPKD #KidneyDiseaseAwareness #Donate #Support #Health

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

In the most recent study of 10 women with a history of KD, only one experienced an obstetrical complication of post-partum haemorrhage, which was possibly related to premature re-institution of heparin therapy after delivery (1). This highlights the need for more studies into the management of KD and associated cardiovascular sequelae in order to develop evidence-based guidelines for obstetricians to support the mothers and babies affected by KD. Two women in this study delivered infants that developed KD at two and five months. Both mothers were unaware of the genetic component to susceptibility to KD and were unfamiliar with the characteristic clinical signs of KD because they had no personal memory of their illness in childhood. This underscores the need to improve knowledge of the disease’s genetic risk in people with history of the disease. Read more on the subject here: https://lnkd.in/dKbU6-5u #kawasaki #kawasakidisease #kawasakidiseaseUK #heartawareness #charity #charityfundraising #CharityUk

I rarely to never post personal posts on here, but this was worthy. #coatsdisease #coatsdiseaseawareness #coatsstrong #curecoats https://lnkd.in/eCXGeagG another year, another Coats' 5k! Help support B in finding a cure for Coats! Another year, another Coats' 5k! For anyone whose interested in supporting B's 5k team, donating for research towards a cure, or learning more in general, especially if you work with children, I highly encourage you to check out Jack McGovern Coats' Disease Foundation - you never know whose sight you could help save! We included his story over the years in his page, but here's an update since the last Coats' post! Present day (May 6, 2024): Today is B's 5th Birthday. He was officially diagnosed with Coats' the day before his 3rd birthday, marking today as his 2 yr and 1 day anniversary of his diagnosis. Between then and now, he has undergone 4 surgeries, and been declared legally blind in his right eye. Coats' was something we had never heard of, and there are few things scarier in the world than being told your child has a rare disease with no known cause or cure. As a parent your whole instinct is to protect and guide your kids, but how do you do that when your kid is diagnosed with a rare disease that has virtually no answers....insert Jack McGoverns Coats Disease Foundation. The single most feeling I remember during the diagnosis was overwhelmed. We had SO MANY questions, with virtually no answers. And not even the most experienced medical professionals could give them to us. I encourage every one to research #knowtheglow and check out Jack McGoverns foundation - you never know whose sight you could help save! And if you're able to support, every cent helps! While there is no cure today, we are forever hopeful that in the future we can find a cure and a treatment for B and others with Coats'.

Thank you to Empathy.co and MotiveMarket.com for inviting me to the Fundación Síndrome de Dravet charity dinner last Friday. Thanks to it, we could help a good cause and be aware of this genetic syndrome that affects so many individuals, including Martina. 🦋 What is Dravet Syndrome? Dravet Syndrome is a rare and severe form of epilepsy that begins in infancy or early childhood. It is characterized by frequent, prolonged seizures that are often triggered by high body temperature (hyperthermia). This genetic disorder affects approximately 1 in 15,700 individuals. 🦋 Why Awareness Matters Raising awareness about Dravet Syndrome is crucial for several reasons: 🟣 Early diagnosis can lead to better management of symptoms. 🟣 Increased funding for research may lead to improved treatments. 🟣 Support for affected families can make a significant difference in their quality of life. 🦋 By supporting organizations like Fundación Síndrome de Dravet, we can contribute to a brighter future for those affected by this challenging condition. I encourage everyone to learn more about Dravet Syndrome and consider supporting research and awareness efforts. Together, we can make a difference in the lives of those affected by Dravet Syndrome. #DravetSyndrome #RareDisease #Epilepsy #Charity #MakingADifference

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

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