Sparsh Hospice - Centre for Palliative Care’s Post

Today is the day! Our new resources for Systemic JIA (also known as Still’s disease) are launching today. We have a new leaflet explaining what Systemic JIA is and why it is better to call it Still’s disease. It gives details of the signs and symptoms of Still’s disease, treatment pathways and crucially the signs and symptoms of Macrophage Activation Syndrome (MAS) which is a rare but serious complication of Still’s disease. To accompany the leaflet, we have created a dedicated website at www.stillsdisease.uk Families who have already told us that their child has this sub-type of JIA, will be sent a copy of the new leaflet in the coming weeks. It will also be shared with Paediatric Rheumatology teams. We would like to express our deepest thanks to everyone involved in making this much-needed resource a reality. We believe that it has the potential to save lives. #JIA #JuvenileArthritis #JuvenileIdiopathicArthritis #JuvenileArthritisResearch #Arthritis #ChildhoodArthritis #ChronicIllness #AutoimmuneDisease #JARProject #JIAWarrior #ArthritisAwareness #charity #CharitableCause #Support #JIAVIPResearchPanel #fundraising #KidsWithArthritis #KidsGetArthritisToo #DontBeAloneWithJIA #InstaCharity #RaiseAwareness #ThinkJIA #AwarenessIsEverything #PaediatricRheumatology #JIAResearch #PPIE #SystemicJIA #sJIA #Stillsdisease

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

💙 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 are honored to share the words of patients' who have undergone a successful kidney transplant. Their journey of recovery is a beautiful reminder of the hope organ donation can bring to those in need. We want to see more families in need experience that same hope.   #kidneytransplantjourney #kidneytransplantsurvivor #kidneytransplant #clienttestimonial #clientappreciation #clientfeedback #ValuedCustomers #clientreview #reviewtime #Testimonials #HappyClients #happyclientdiaries #clientdiaries #5starreview #feedbackmatters #Feedbacktime #clientsatisfaction #testimonials #positivefeedback #thankyou #happymoments #kidneyfailure #kidneyproblems #kidneytreatment #nephrologist #healthcare #healthandwellness #healthylifestyle #hyderabad #drarunponna

𝗖𝗼𝗺𝗽𝗮𝘀𝘀𝗶𝗼𝗻𝗮𝘁𝗲 𝗖𝗮𝗿𝗲 𝗳𝗼𝗿 𝗧𝗲𝗿𝗺𝗶𝗻𝗮𝗹𝗹𝘆-𝗜𝗹𝗹 𝗣𝗮𝘁𝗶𝗲𝗻𝘁𝘀: 𝗕𝗿𝗲𝗮𝘀𝘁 & 𝗟𝗶𝘃𝗲𝗿 𝗖𝗮𝗻𝗰𝗲𝗿 𝗔𝘄𝗮𝗿𝗲𝗻𝗲𝘀𝘀 𝗠𝗼𝗻𝘁𝗵 This month highlights the #International #Awareness month for #breast and #liver #cancer, which are considered the most common cancer types in Egypt according to studies. #HospiceEgypt provides #holistic high-quality #care for those who are suffering from #severe #illness which has advanced beyond the limits of existing #therapeutic options. Hospice Egypt's mission is rooted in the belief that every individual, regardless of socio-economic status, #gender, or #religion, deserves #access to #comprehensive healthcare #services, ensuring that terminally-ill #patients receive #dignity, #comfort, and #honor in their final chapter. Know more: https://hospiceegypt.org/ #HospiceEgypt #LifeNotDays #ngo #csr #charity #healthcare #hospice #hospicecare #BreastCancerAwarenessMonth #LiverCancerAwareness

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

Dear network - Please read until the end - and please DONATE! 💟 to this cause that is very personal to me. 📅 Today marks a significant day as it is dedicated to raising awareness and understanding the struggles of those living with rare diseases. It's Rare Disease Awareness Day, a time to stand in solidarity with millions who navigate the complexities of conditions that often go unseen in the broader health narrative. One such condition is Neurofibromatosis (NF). Neurofibromatosis is not just one disease but a group of three genetic disorders: NF1, NF2, and schwannomatosis, each affecting the body in different ways. They cause tumors to grow on nerve tissue and can develop anywhere in the nervous system, including the brain, spinal cord, and nerves. NF is more common than many realize, affecting about 1 in every 3,000 people globally. Here are some quick facts about NF: - It's as common as Cystic Fibrosis, though not as widely recognized. - NF can lead to a range of complications, including hearing loss, learning impairment, heart and vascular issues, and severe pain. - There is currently no cure for NF, and treatments are often focused on managing symptoms and complications as they arise. - Last but not least, there is a lot of uncertainties as the patient does not know how bad the disease will evolve, bringing additional stress and anxiety. Today, I urge you to take a moment to learn about NF. By understanding these conditions, we can foster a more compassionate and supportive community for those affected. Here's how you can help raise NF awareness: 🎒 Educate Yourself and Others: Spend some time today learning more about Neurofibromatosis. The more you know, the more you can educate others and spread awareness. 💬 Share on Social Media: Use the hashtags #RareDiseaseDay and #EndNF to join the global conversation. Share posts, infographics, and stories about NF to help educate your network. 💰 Support NF Organizations: Consider donating to organizations that are working tirelessly to research NF, provide patient support, and advocate for better treatments and care. 👟 I will do my part - I will run the Paris marathon in April to raise awareness and hopefully money and would be grateful if you could consider giving a small amount (maybe the price of your coffee) to our page in support of the Childhood Tumour Trust in the UK: https://lnkd.in/gkMChrjv 💲 And for my Swiss network - you can also support us by donating to a Swiss association working tirelessly with patients and research organisations across Switzerland and Europe (see comments for alternative donation options) Even small actions create ripples that can grow into waves of support and progress. On this Rare Disease Awareness Day, let's amplify the voices of those living with Neurofibromatosis and make a commitment to understand, advocate, and support. Together, we can make a difference. With gratitude, thank you! 🌻 Alexandra #EndNF

𝗜𝗺𝗮𝗴𝗶𝗻𝗲 𝗵𝗼𝘄 𝗼𝗻𝗲 𝗴𝗲𝗻𝗲𝗿𝗼𝘂𝘀 𝗱𝗲𝗰𝗶𝘀𝗶𝗼𝗻 𝗰𝗮𝗻 𝘀𝗮𝘃𝗲 𝗱𝗶𝗳𝗳𝗲𝗿𝗲𝗻𝘁 𝗹𝗶𝘃𝗲𝘀. This isn’t just a thought—but a reality within our reach through the act of organ donation. Organ donation is a life-saving process, however, the gap between the needs for organ transplants and their availability is striking. As per the Ministry of Health and Family Welfare, over 300,000 patients are listed in India for transplantation. 𝗧𝗿𝗮𝗴𝗶𝗰𝗮𝗹𝗹𝘆, 𝟮𝟬 𝗽𝗮𝘁𝗶𝗲𝗻𝘁𝘀 𝗹𝗼𝘀𝗲 𝘁𝗵𝗲𝗶𝗿 𝗹𝗶𝘃𝗲𝘀 𝗲𝘃𝗲𝗿𝘆 𝗱𝗮𝘆 𝗱𝘂𝗲 𝘁𝗼 𝘁𝗵𝗲 𝘀𝗵𝗼𝗿𝘁𝗮𝗴𝗲 𝗼𝗳 𝗮𝘃𝗮𝗶𝗹𝗮𝗯𝗹𝗲 𝗼𝗿𝗴𝗮𝗻𝘀. One deceased organ donor can save up to eight lives. Two donated kidneys can free two patients from dialysis treatments. One donated liver can be split to go to two patients on the waitlist. Two donated lungs mean two patients are given a new life, and so on others can receive the beautiful gift of life. Deceased donation rates have been consistently less than 1 donor per million populations in India as compared with 30–50 donors per million populations in countries like Spain and the United States of America. 𝗧𝗼𝗼 𝗺𝗮𝗻𝘆 𝗽𝗲𝗼𝗽𝗹𝗲 𝘀𝘁𝗶𝗹𝗹 𝗵𝗼𝗹𝗱 𝗯𝗮𝗰𝗸 𝗯𝗲𝗰𝗮𝘂𝘀𝗲 𝗼𝗳 𝗹𝗮𝗰𝗸 𝗼𝗳 𝗮𝘄𝗮𝗿𝗲𝗻𝗲𝘀𝘀 𝗮𝗻𝗱 𝗺𝗶𝘀𝗰𝗼𝗻𝗰𝗲𝗽𝘁𝗶𝗼𝗻𝘀 𝗮𝗯𝗼𝘂𝘁 𝗼𝗿𝗴𝗮𝗻 𝗱𝗼𝗻𝗮𝘁𝗶𝗼𝗻. It’s important to raise awareness that let not the misconceptions hold you back from saving lives and be a shining light for countless people in need. 𝗪𝗲 𝗮𝘁 𝗠𝗮𝗻𝗸𝗶𝗻𝗱 𝗣𝗵𝗮𝗿𝗺𝗮 𝗵𝗼𝗻𝗼𝗿 𝘁𝗵𝗲 𝗲𝘅𝘁𝗿𝗮𝗼𝗿𝗱𝗶𝗻𝗮𝗿𝘆 𝗶𝗻𝗱𝗶𝘃𝗶𝗱𝘂𝗮𝗹𝘀 𝘄𝗵𝗼 𝗵𝗮𝘃𝗲 𝗰𝗵𝗼𝘀𝗲𝗻 𝘁𝗼 𝗱𝗼𝗻𝗮𝘁𝗲 𝘁𝗵𝗲𝗶𝗿 𝗼𝗿𝗴𝗮𝗻𝘀. These unsung heroes, through their selfless act, have gifted not just organs but the very essence of life and hope to those in desperate need. #MankindPharma #organdonation #awareness #kindness #humanity #healthcare

Hello new and old friends, I need your help! (tl;dr please donate at the link below) In the spring of 2022 I had a severe #eczema flare up that impacted every aspect of my life. After a long, frustrating period of treatment obstacles, I finally found a medication that works for me. Now that I am feeling better, I am participating in the National Eczema Association's mission to support every eczema patient. So much progress has been made (hello, monoclonal antibody treatments!), but so much work still needs to be done (topical steroid withdrawal, underrepresented patient demographics, etc). Much of this is a numbers game, so I need your help! Here are some ways you can help: 1. Donate to my Itching For a Cure #fundraiser. This funds the NEA's catalyst research grant. https://lnkd.in/gsbdPwBg 2. Share my Itching for a Cure fundraiser. Repost here on LinkedIn, share on other social media platforms, or send to a friend. 3. Send an auto-filled (or personalized) letter to reps in support of the #safestepact, to help patients get their prescriptions covered by insurance. https://lnkd.in/gWfzkDBF Thank you!