As part of Heart Health Awareness Month, the Integrative Pain Healers Alliance, the Angiofoundation, the editors of Prevention101 and NYCRA-news joined hands with advocacy groups like the For Elysa Foundation to form "Mommies on a Mission" to promote Pediatric Myocarditis awareness in pursuit of the national diagnostic movement.
Saving Lives Through Advocacy & Research:
FOR ELYSA FOUNDATION
We met the directors of a remarkable national advocacy foundation called FOR ELYSA FOUNDATION‐ a non‐profit organization dedicated to promoting Education, providing Light, and supporting Research in the areas of viral myocarditis and pediatric sudden cardiac arrest. (www.ForElysa.org). Mrs. Jana Rojas and husband Jaime Rojas from Kansas City developed this organization inspired by the loss of her vibrant little girl, Elysa Louise Rojas who passed away at the tender age of two years old. " In Elysa’s case, a common childhood virus was responsible for her myocarditis. The virus either attacked Elysa’s heart directly or caused her immune system to attack her heart muscle in a “friendly fire” fashion while trying to fight the virus. The inflammation in her heart increased drastically and very quickly to the point of sudden cardiac arrest. Doctors and scientists do not fully understand the mechanisms within the body that cause a virus to “go haywire” in the immune systems of individuals with myocarditis. There is currently no way to predict when/if this will occur."
All materials in this section are published with express consent from The For Elysa Foundation. For complete Information, visit www.FORELYSA.org
HOW & WHEN TO CHECK FOR PEDIATRIC MYOCARDITIS
By: Jana Rojas
1) acutely ill children in ED/urgent care/hospital inpatient settings
2) children exhibiting the signs and symptoms you have outlined (fainting, sudden fatigue, shortness of breath, chest pain, palpitations),
3) after known Covid or other viral infection with prolonged or delayed healing (ie ongoing fatigue, shortness of breath, etc)
4) and possibly PRE-PARTICIPATION SPORTS PHYSICALS. The pre participation screenings would be enhanced cardiac screenings in general to ideally pick up congenital heart defects and other concerns as well as myocarditis.
Myocarditis Detection Written by: Dr. Robert L. BardSince the advent of Covid-19 Long Haul studies in 2021, the medical diagnostic community shifted into overdrive- seeking out all available screening and examination protocols to assess health problems called POST-ACUTE SEQUELAE (PASC). One of the recent Covid-19 related headliners is the rise in cases of MYOCARDITIS in children 16 years and under. CDC Reports link the pathological impact with covid infection since it is proven that Viral infections are a common cause of myocarditis.
Myocarditis is defined a an inflammatory disorder of the heart muscle (myocardium) leading to cardiac dysfunction. It is also recognized as myocardial cell death . Checkups for this also reviews for PERICARDITIS (the inflammation of the outer lining of the heart). Various causes of myocarditis includes: Viral Infectious including adenoviruses, echoviruses, enteroviruses like the coxsackie viruses. In addition, predisposition can occur from those with Autoimmune diseases such as Celiac disease, Churg-Strauss syndrome, Crohn disease, Kawasaki disease, lupus, rheumatoid arthritis, sarcoidosis etc. (See NIH chart for full list of causes- ).
As with any critical disorder, detecting early stages of myocarditis allows for a higher opportunity to treat and even eliminate the health risk. In children, symptoms include: Fever, Fainting, Breathing difficulties, Rapid breathing, Chest pain and Rapid or irregular heart rhythms . In adults, symptoms range from chest pain, shortness of breath, at rest or during activity and fluid buildup with swelling of the legs, ankles and feet. To prevent possible heart damage, a cardiologist may order one of a umber of imaging options:
- Electrocardiogram (ECG or EKG)
- Chest X-Ray
- Heart MRI
- Blood Tests
- Doppler Ultrasound for Acute Myocarditis
- Cardiovascular MR Elastography (MRE)
- Ultrasound Elastography
See expanded details on diagnostic protocols, visit: http://pediatricscan.com/myocarditis.html
By Bobbi Kline, MD (Integrative Physician / Genomic Research Specialist)
But it’s only the first step. We also need better tests and tools to quickly and easily identify who is at risk, and better treatments for helping these children. This requires a multidisciplinary approach that includes better diagnostics including noninvasive technology, along with effective medications and other treatments. It also includes the burgeoning field of genomics and personalized medicine, both to provide a better understanding of the why, as well as a powerful tool to predict and prevent. For, at the heart of this, is understanding each child’s uniqueness in a way that empowers. Two studies have been published this year that have the potential to leverage the power of DNA to identify who is at risk for developing myocarditis after a viral infection. Not only that, but also which of those children are most likely to recover, and therefore need fewer interventions, and which of those children are most at risk for sudden death and require much more intensive treatment and support. And, in today’s world, we also need the power of legislation to make sure everyone has access to this higher level of care. There is much promise to change the trajectory of this devastating illness, and it is only through advocacy such as this that it will happen.
A Pediatric Cardiologist Talks Myocarditis & COVID-19 | Perspectives on COVID-19 Vaccine for Kids
VIDEO SPOTLIGHT 1: Dr. Matthew Elias, Pediatric Cardiologist at Children’s Hospital of Philadelphia talks Myocarditis & COVID-19 | Perspectives on COVID-19 Vaccine for Kids
As a pediatric cardiologist at the Children’s Hospital of Philadelphia, Dr. Matt E. has treated children experiencing inflammation of the heart muscle, called myocarditis, following COVID-19 infection or receipt of COVID-19 vaccine. Dr. Matthew Elias discusses the differences between myocarditis in these two scenarios, stating, “It's important to know that heart issues, including myocarditis, are much more common and more severe with the COVID-19 infection compared to the vaccine.” For information about COVID-19, visit http://COVIDVaccineAnswers.org.
Video created by and for the Vaccine Education Center at Children’s Hospital of Philadelphia. ©2021. All rights reserved.
The Vaccine Education Center at Children’s Hospital of Philadelphia (VEC at CHOP) is composed of scientists, physicians, mothers, and fathers devoted to the study and prevention of infectious diseases. The Center was launched in October 2000 to provide accurate, comprehensive and up-to-date information about vaccines and the diseases they prevent. For information about vaccines and vaccine safety, visit http://vaccine.chop.edu.
THE 2022 NATIONAL "ONE VOICE" FOR CHILDREN COLLECTIVE
In Feb. 2022, lead directors of The AngioFoundation, The NY Cancer Resource Alliance and publishers of PREVENTION101.org forged a collaborative outreach community project with the For Elysa Foundation (myocarditis awareness org) to form a national coalition of clinical support associations, research foundations, researchers and parent groups dedicated to the awareness of rare pediatric diseases and critical disorders. This collective concept called "MOMMIES ON A MISSION" is a unique and remarkable platform that aspires to support the many pediatric disorders that plague today's children.
Known as 'Project One", Mommies on a Mission will launch the ONE VOICE crusade to leverage new awarness response for the deadly health threat of Myocarditis in America's children. "MOMMIES ON A MISSION" is a creative title Mrs. Jana Rojas (director of For Elysa Foundation) used to describe her fellow advocates who, like her, established a dedicated benevolent program to battle pediatric myocarditis through education, awareness and to support clinical research. Even more are driven to forge standardized screening of myocarditis as part of a national prevention and early detection initiative. "Losing another child to this terrible and insidious disease is one child too many! It's time we joined hands with all groups, legislators, medical societies and anyone who can make a difference. We hope to deploy a multi-stage battle plan to address this disease and enact new solutions in every pediatrician's office!", states Dr. Noelle Cutter (Molloy College, NY Cancer Resource Alliance).