Children's Organ Transplant Association’s Post

**FAQ: Pediatric Heart Transplants** Q: What are the most common heart diseases that require a heart transplant? A: The most common indication for a pediatric heart transplant is cardiomyopathy. The second most common indication for a heart transplant is complex congenital heart disease. At Enduring Hearts, we are the only national nonprofit solely dedicated to funding research to increase the longevity and improve the quality of life for children with a transplanted heart. Together, we will continue to ensure healthier lives for these young warriors. Learn more at [enduringhearts.org] #PediatricHeartTransplants #EnduringHearts #HeartHealth #ChildrensHealth #MedicalResearch #Nonprofit #HeartTransplantAwareness

LinkedIn Network! I normally shy away from posting anything personal on my LinkedIn but please join us in supporting my nephew Leo's fight against dilated cardiomyopathy also known as end stage heart failure. Every donation to his GoFundMe page brings us closer to the hope and the fighting chance he so deserves. Read more about his story below 👇 #HelpLeoHeal #StrengthInCommunity"

While we have had transplant recipients share their experience, and some donors share their perspective, it is very rare for both donor and recipient to share their perspective. Link to the other lived experience in the comments. "For me, the fear of surgery was greater than the fear of losing one kidney. I have always kept good health and had no surgeries before in my life. I had to get past this fear, to begin with. The decision to donate a kidney requires a lot of courage. Even though I had decided to donate my kidney and I had research to reassure me, you are not 100% sure till the last minute. The months before the surgery were very tough for me. The fear of the unknown and negative thoughts came up, especially at night and I had to rise above them and convince myself that my decision was the right one. There have been instances where donors have run away just before the surgery as their fear has overtaken their desire to help. I had to be sure of the step I was about to take. " When her sister needed a kidney transplant, Vaishali navigated a complex set of emotions before deciding to donate her kidney to Hemali. On February 6, 2024, they completed one healthy year post-transplant. Vaishali shares her experience of being a kidney donor, the research she did and why she talks about being an organ donor. "I would also like to encourage people to donate their organs after their death because one deceased donor can save up to 8 lives. After your death, your organs will be burnt or buried along with you. Why not donate them and give someone a second chance at life?" Kidney Warriors Foundation MOHAN Foundation Jaya Jairam #WorldKidneyDay #KidneyAwarenessMonth #CKDAwarenessMonth #OrganTransplant #KidneyTransplant #ChronicKidneyDisease #OrganDonation #KidneyDonation #LivedExperiencesMatter Smita Vyas Kumar Dr Shital Patel Aparna Mittal https://lnkd.in/gBzJqZR3

Another well-written article on incentivizing kidney donors as a reasonable solution to the chronic kidney shortage. https://lnkd.in/gWhzQEKM #kidneydonation #kidneydonor #kidneydonorneeded #kidneytransplant #donation #organdonation

Supporting children and young people living with arthritis - from the Young People & Families Service of Versus Arthritis https://lnkd.in/eWh6hgm2 #arthritis #arthritisawareness #JIA #bookclub #research #youngpeople #rheumatology #rheumatoidarthritis #community #VersusArthritis #charity #notforprofit

Dear network - Please read until the end - and please SUPPORT patients and research! 💟 📅 Today is Rare Disease Awareness Day, raising awareness of diseases which individually are not common, but collectively impact the lives of approximately 300 million people globally. One such disease which we have come to know privately in the last year 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: How can you help? 🎒 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. SPONSOR US! 👟 Alexandra Lejeune and I will do our part - we're going to run the Paris marathon in April to raise awareness - and much needed funds to support patients and primary research. We would be grateful if you could consider supporting us! UK/International friends and colleagues can sponsor us: https://lnkd.in/gkMChrjv to raise funds for the Childhood Tumour Trust. Swiss friends and colleagues - please consider a donation to GER-NF using the QR Code in the comments. 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! 🌻 #shinealight #endNF1

Hi Everyone! The 1cc Team is transporting a 3 month baby with Acyanotic congenital heart disease and chronic lung disease. Acyanotic heart disease is where the blood contains enough oxygen but it's pumped abnormally around the body. Babies born with acyanotic heart disease may not have any apparent symptoms but, over time, the condition can cause health problems. Chronic lung disease (CLD) is a respiratory (breathing) condition. It is usually diagnosed in premature babies who need ongoing help and support with their breathing beyond 36 weeks. CLD and long-term breathing problems can also affect babies who need ongoing help and support with their breathing 28 days after birth. #savinglives #forfree #1ccFoundation #EMS #criticalcare #donate #PediatricCare #patientcare #DonateToday #Freemedicalservice #PediatricEMS #isupport1cc #AmbulanceServices #CriticalCare #ChildHealth #SDG #loveyourwork Support our cause by donating here: https://lnkd.in/dq3NB39B Connect with 1CC Foundation: Facebook: https://lnkd.in/dYiSG4mw Instagram: https://lnkd.in/duRYP4ye LinkedIn: https://lnkd.in/dkSPM79w Twitter/X: https://lnkd.in/dvqq-GvP

March 14 is not just π Day. It’s also World Kidney Day. Coincidentally, World Kidney Day is just one day after my own kidney anniversary – March 13. That was the day 24 years ago when my life was changed by a family’s selfless decision during the worst moment of their lives to donate their daughter’s organs to people like me. At the time of my transplant, I was a college student, working to pay the bills and going to dialysis treatments three days per week for hours at a time. I had been on dialysis for four years after my first transplant failed during my freshman year of college. Twenty-four years is a long time. It’s not always easy, but I’m lucky. There are much better medicines to prevent rejection than there were back in 1983 when I had my first transplant. I’ve got good family support and the capacity to advocate for myself. I’m also a white person with means, which means I get great access to health care and doctors that others do not. Of every seven people around you right now, one of them has kidney disease. Yet, nine out of 10 of people with kidney disease don’t know they have it. For many people, once they have symptoms, the damage is already done. And Black and Brown people are at highest risk because of the systemic, intractable lack of health equity in our country. Here’s a couple things you can do: 1. Protect yourself. If you think you may be at risk, ask your doctor to check your blood AND your urine at your next check-up. It’s weird that it isn’t standard practice to screen for kidney disease, especially considering how easy it is, so as health care consumers, it’s yet another thing that’s on us to understand and ask about. 2. Get educated and engage. Learn more about kidney disease, it’s impact and the woeful lack of funding, attention and awareness it receives. A great place to start is the American Kidney Fund (AKF), where I’m a member of the Board of Trustees. They do amazing things – particularly on supporting patients, advancing health equity and pursuing greater clinical trial diversity. Start here: https://lnkd.in/ePpeadBf. 3. Donate. Speaking of AKF, pitch in a few dollars to support all those amazing things. For every one dollar donated, 97 cents goes to patients and programs. Donate during March and they’ll match it! Big thanks today and every day to the family that saved my life 24 years ago this week. I owe this anniversary to them, my own family and the countless health care professionals I’ve relied on over the years. Thank you, and happy Kidney Day!

video#3 in living kidney donor series https://lnkd.in/g75MciB3 8:25 minutes This is on my YouTube channel: Dr. J's Kidney Hope Channel, which includes videos about living kidney donation for those considering it, and videos about kidney transplantation for patients with kidney failure