Good Things – Research
One of the foundation’s goals was to support research in the field of Viral Myocarditis which was determined to be the cause of Amanda’s passing. Once this discovery was made, we searched out answers to how and why this happened to Amanda. Dr. Jeffrey Towbin at Texas Children’s Hospital was the expert in the field at the time and spent many hours on the phone with us. We are forever grateful to Dr. Towbin for his expertise and kindness. For this reason, and in the hopes that more research will lead to fewer and fewer children passing away from Viral Myocarditis, the foundation made a donation to the Baylor College of Medicine and Texas Children’s Hospital where the pediatric cardiology department is studying viral myocarditis and cardiomyopathy.
We were also pleased to discover that another highly regarded foundation, the Children’s Cardiomyopathy Foundation, also supports this reseach. The founder of Children’s Cardiomyopathy Foundation, Lisa Yue, who lost two children to this condition was honored by Good Housekeeping as one of five “Heros for Health”. Lisa was also very supportive when we lost Amanda. We are confident that our support will lead to real answers in the study of Viral Myocarditis and help families everywhere. We are grateful that Amanda’s Foundation has been added to the Benefactors section of their web site.
Myocarditis is a disease marked by inflammation and damage of the heart muscle. Although the exact incidence of myocarditis is not known, it is estimated that several thousand patients per year are diagnosed in the United States. Myocarditis usually attacks otherwise healthy people. It is believed that 5 to 20% of all cases of sudden death in young adults are due to myocarditis. There are many causes of myocarditis, including viral infections, autoimmune diseases, environmental toxins, and adverse reactions to medications.
Myocarditis is uncommon and can be caused by a viral infection or a self-directed immune response (this is when the person’s own immune system attacks the body, such as in autoimmune diseases like rheumatoid arthritis or lupus). Some autoimmune diseases can affect the heart and cause myocarditis. Rare cases have also been associated with a variety of infections, toxic injuries, adverse drug reactions, and even cancer. Most cases of myocarditis have no symptoms and are only identified by an electrocardiogram or by blood tests that detect heart injury.
Because myocarditis is rare, the best way to diagnose and treat the disease is not known, but research is being done.
Baylor College of Medicine: www.bcm.edu/pediatrics/cardiology/.
To find the foundation, choose “About Us” and then “Benefactors”.Children’s Cardiomyopathy Foundation: www.childrenscardiomyopathy.org.