ACTA2 Alliance’s Post

Huntington's disease awareness - in United Kingdom #huntingtonsdiseaseawareness #genetic #rare #neurological #fatal #Children #born to #hd #affected #parents have a 50% #chance of #inheriting as well https://lnkd.in/gyPSaiAN

Commonly mistaken for PCOD (Polycystic Ovarian Disease), most people with Endometriosis tend to do their own treatments without proper consultation and guidance.    If diagnosed early, this condition can be easily treated effectively.   Know your body. Care for yourself. Enjoy your womanhood. Happy Endometriosis Awareness Month.      #march1 #endometriosisday #endometriosisawarenessmonth #periodawareness #gynecology #femalereproductivesystem #awareness #selfcare #diagnosis #womanhood #cookoff

🩸💙 World Hemophilia Day 💙🩸 Today, on World Hemophilia Day, MeCare stands in solidarity with the global community to raise awareness about hemophilia and other inherited bleeding disorders. This day is dedicated to increasing understanding, advocating for better access to care, and supporting the millions of individuals and families affected worldwide. Hemophilia is a rare disorder in which blood doesn't clot normally due to the lack of sufficient blood-clotting proteins. Despite the challenges posed by the condition, advances in medical research and treatment have significantly improved the quality of life for those affected. Yet, the journey towards equity in care and the eradication of treatment disparities continues. At MeCare, we are committed to this cause, working tirelessly to ensure that individuals with hemophilia and bleeding disorders have access to the care and support they need. We build connections with healthcare providers and organizations specializing in hemophilia care to offer comprehensive resources and assistance to our community. 🔹 Connecting to Specialized Care: We leverage our network to connect individuals with hemophilia to healthcare providers experienced in their management and treatment, ensuring access to knowledgeable care. 🔹 Advocacy for Access: Understanding the critical need for comprehensive care, MeCare advocates for increased access to treatments and services that can transform the quality of life for those with bleeding disorders. 🔹 Support and Guidance: While we are growing our resources, MeCare is here to offer guidance and support, helping navigate the healthcare landscape to find the assistance needed. This World Hemophilia Day, let's unite in our efforts to shine a light on hemophilia, push for advancements in treatment, and advocate for equitable access to care for all. Together, we can make a difference in the lives of those affected by bleeding disorders. Join us in marking this important day and spreading awareness about hemophilia and the need for equity in care. #WorldHemophiliaDay #BleedingDisorders #EquityInCare #MeCare #Solidarity

Today is the #worldkidneyday! Chronic Kidney Disease (CKD) or chronic kidney failure is a prevalent condition, affecting over 10% of the global population. As a leading non-communicable cause of death worldwide, CKD necessitates effective diagnostic tools for early detection and management. Traditionally, estimating Glomerular Filtration Rate (GFR) through serum creatinine has been the norm. However, this method poses challenges due to its dependence on muscle mass, age, and its inapplicability in pediatric cases. Enter #Cystatin C – a game-changer in renal function assessment. Unlike creatinine, Cystatin C's plasma concentration remains stable across demographics, unaffected by factors like age, sex, or inflammatory processes. Its exclusive determination by GFR renders Cystatin C an unparalleled indicator of kidney function. Tosoh's innovative Cystatin C test opens doors to precise CKD diagnosis and monitoring. By accurately measuring Cystatin C in serum and plasma, we're empowering healthcare professionals with reliable tools to combat CKD effectively. Early detection and continuous monitoring are key in tackling CKD. Let's join forces to ensure “Better Diagnostics For Better Living”. We can make a difference in the fight against chronic kidney disease! #kidneyhealth #ShowYourKidney #laboratoryequipment #laboratory #kidney #kidneycare

With TOSOH, Cystatin-C examination is more precise... ensuring a more reliable diagnosis, increase success in treating CKD.

Congenital heart disease (CHD) has a prevalence of 8.2 per 1000 live births and is a leading cause of infant morbidity and mortality. Double outlet right ventricle (DORV) is a type of ventriculoarterial connection in which both great arteries arise either entirely or predominantly from the right ventricle. Hearts with DORV are an extremely heterogeneous group showing various morphological features. Prenatal awareness of CHD and parental education allow preparation for the birth of a neonate that will require specialized care and services. Here is a 16 weeks fetus with DORV and complete atrioventricular septal defect (AVSD).

Did you know that one in ten people in the UK are currently affected by an autoimmune disease? Inflammatory Bowel Disease is an autoimmune disease, and is the umbrella term for Crohn’s disease and ulcerative colitis. A recent study supported by the IBD BioResource has found a major cause of IBD. The NIHR BioResource runs a dedicated research programme - the IBD BioResource - to recruit patients for studies aimed at improving our understanding of IBD and help develop treatments to improve patient outcomes. More than 47,000 adult patients have joined so far, and recently a paediatric IBD BioResource was launched to help understand the condition in young people. NIHR BioResource has been going strong since 2006 and exists to support studies with true public health benefits across the UK. What discovery for childhood health could you help find? Join D-CYPHR. Link to blog: https://ow.ly/hloX50TCi6y IBD BioResource #DCYPHR #HealthResearch #DNAresearch #InflammatoryBowelDisease #IBD #CrohnsDisease #Colitis

Thank you Chronic Love Club for acknowledging that today, April 29, is #UndiagnosedDay. We (Next Generation of Cystinosis) with cystinosis and rare diseases and loved ones adjacent to loved ones living rare feel similarly to those seeking common chronic illness diagnosis because we too as rare humans also have more common chronic diagnosis as we naturally age. The five reasons Chronic Love Club shares for why a diagnosis in a medical model healthcare system in your country is important: 1. To understand what is happening to their body. 2. To be able to access the right & effective treatments. 3. To be able to start getting care as soon as possible. 4. To be able to find community & support groups. 5. To be taken more seriously in healthcare situations. In #AdultsLivingRare, it can take between 5-8 years to get an accurate rare disease diagnosis. Center for Chronic Illness Next Generation of Cystinosis Patient Worthy Kaleidoscope Rare Disease Stories The Australian Cystinosis Foundation Patients Rising 💛💛💛 #AccessIsLove #AutismAcceptance #AuDHD #ADD #ADHD #AudioProcessingDisorder #AYA #CardiacDisease #Cystinosis #DisabledJoy #DeafBlindHistory #Epilepsy #FabryAwarenessMonth #LysosomalDisease #NeurologicalDisease #MedicalPTSD #OCD #RedInstead #ReimagineRare #RightToBelong #SarcoidosisAwarenessMonth #Seizures #SjogrensAwarenessMonth #Stroke #VisualProcessingDisorder #WeAreBillionStrong [ID: the slide below is from Chronic Love Club's Facebook page. It is a teal background with darker teal starburst images and varying shades of teal in a wavy line above the words: 5 Reasons Why Seeking A Diagnosis Is Important To Patients. A wavy black arrow is noting there are more slides available on Chronic Love Club's Undiagnosed Diseases Post on FB.]

Adults with cerebral palsy are 75% more likely to have a chronic disease. They have double chances of developing cardiovascular disease & and chronic respiratory DS. They can also have an earlier onset of disturbance in gastrointestinal functions including Gastroesophageal reflux, indigestion malnutrition, and constipation. Prevention & and early recognition are always better than treatment for good outcomes. In this video, Dr Vikash Kr Shrivastava has given brief details about the problems of these individuals. #cerebralpalsy #cerebralpalsyawareness