WELCOME, and thanks for coming! The Autonomic Avengers will be out in force for our second year to try to bring hope to the growing number of kids whose lives have been forever altered by dysautonomia.
What are we running for?
Autonomic Avengers is following up on the amazing progress we made last year to help ease some of the burdens that the medical specialists and patients who deal with dysautonomia are struggling under every day. Last year we kicked off an incredible project to create an interdisciplinary clinic to bring the many specialists and the latest research together to provide a wholistic level of care to dysautonomia and its comorbidities. Our first step last year was to bring immediate help by raising funds for a nurse care coordinator dedicated to helping juggle the many moving pieces by working with patients, families, and insurance as well as help families communicate with the constellation of subspecialists. And guess what? We raised enough money to cover a half-time position for three years! The position was posted and the successful candidate starts in October! Now we are pushing to be able to make that position full time.
What Is your Autonomic System?
It’s the stuff your body does without you thinking about it. The autonomic nervous system is responsible for controlling many of our bodies’ vital functions such as maintaining heart rate, blood pressure, sweat and saliva production, and bowel and bladder function.
What happens when it doesn’t work right?
It’s called dysautonomia and it can affect all or some of these body functions and therefore often leads to multiple debilitating symptoms. For some the impacts are relatively mild, and for others they are absolutely debilitating. Dysautonomia is not rare. Over 70 million people worldwide live with various forms of dysautonomia. People of any age, gender or race can be impacted, and yet the general medical community knows little about the disorders as there is little training and few diagnostic tests. This means that most patients spend years being tested for other diseases, misdiagnosed, and sometimes, when nothing obvious is seen, told that they have a psychological disorder and not a physical disorder.
And even when a patient is finally diagnosed, after years of struggle, there is no cure for any form of dysautonomia at this time.
How does dysautonomia affect Children’s’ patients?
Kids often end up at a hospital like Children’s when their bodies stop being able to handle the dysautonomia and their other doctors have run out of things to try. Previously happy and healthy children come in because they are dizzy or passing out frequently, they can’t eat any longer and are in pain every day. Elite athletes can no longer walk down the hall without help from a walker or braces. Often these kids are scared and traumatized – they have seen so many doctors and been run through so many tests only to be told there is nothing that can be identified.
At special places like Children’s there are people who can help identify the problem. But currently, there is no specialty clinic or person who can coordinate care and help them. Patients might be sent to cardiology because of heart rate issues, and gastroenterology for the GI issues. Genetics, pain clinics, hematology, immunology, psychology/psychiatry, rheumatology, neurology and more come into play for critical involvement. All of this means that a patient with dysautonomia will often require care from multiple medical sub-specialists with many medications for treatment that is so new and evolving that few providers have had the chance to become educated on the current research. Without coordination the burden falls on the family to set up the appointments, keep up on research and share it, check each new medication with the other providers prescribing meds, and track everything with insurance. This requires time and resources which few parents have.
A coordinator is a start to help families put together the jigsaw pieces of symptoms and specialty clinics into one completed puzzle, and that is where the Autonomic Avengers swoop in to help! We hope you will join our team for the race, either in person or virtually, and that you will consider donating to help us meet our goals.
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