What the heck is Dysautonomia?!

So you’ve seen it posted but maybe you’re wondering, “What the heck is dysautonomia and why are we raising money for it?” Dysautonomia is dysfunction of the autonomic nervous system. The autonomic nervous system (ANS) is the system that controls everything the body does automatically including heart rate control, blood pressure regulation, gastric function, temperature regulation, etc. It’s not really something you think about until it doesn’t work properly! Various forms of dysautonomia exist across the world causing debilitating illness in many people. Unfortunately, federal funding for research in dysautonomia is virtually non-existent. Even though it is quite common (there are millions of people with some form of dysautonomia), it is still rarely known, and even less rarely understood in the medical world. 

You may or may not know, but one of the littlest members of our gym, Amelia Payne, is plagued with this condition. 

Amelia has struggled since birth. She would turn blue and lose consciousness all through her infancy. She had severe reflux and her pediatricians thought this was the cause of her “episodes.” She didn’t grow well and, at one year old, barely tipped the scales at 13 pounds. 

At around 18 months old, her “episodes” began to be more severe and impossible to ignore. She began to pass out and have seizures. (These were later discovered to be anoxic seizures—seizures caused by lack of oxygen to the brain, but more on that later). Amelia’s parents (Cody and Karalea Payne) called the ambulance the very first time one of these “episodes” happened. Karalea had begun CPR on Amelia after seeing her lose consciousness and not being able to find a heartbeat. They took an ambulance ride to the hospital, but no immediate abnormalities could be found. 

It took over a year, many different specialists, and more than 100 more of these episodes to finally figure out the cause...her heart was stopping. Completely flat-lining for long periods of time. She wore a remote heart monitor that finally revealed the problem. She had several “pauses” of 6-16 seconds over the course of about two weeks time. One day, a few months before she turned 3, the monitor caught a 34 second asystole (flat-line) along with heart rhythms before and after the asystole that basically resulted in about 1.5 minutes of virtually no circulation. This is why she had seizures...her brain was being deprived of oxygen over and over again each time she had these spells. She had a pacemaker placed the next day. She had a few surgical complications, but after a week in the hospital, she was better and has not had any more problems with asystole or anoxic seizures, she uses her pacemaker about 12% of the time. 

However, her journey was only beginning. This was just another piece of the puzzle. Her mom, Karalea, was determined to figure out the cause. She stumbled across the term dysautonomia and began to research it more. Because dysautonomia is so rarely known, Karalea began to search out a specialist who was familiar with dysautonomia. She took Amelia to a doctor in Toledo, Ohio. Within a year of her pacemaker placement, at 3.5 years old, she was diagnosed with dysautonomia and started taking her very first daily medication (a medication to help keep her blood pressure up and decrease her dizzy spells). 

Over time, more and more problems were discovered and treated with various medications and therapies. In total, Amelia currently has a team of 4 specialists (Rheumatology, Gastroenterology, Neurology, and Cardiology), as well as a few amazing therapists (OT, PT, and VT) and of course her awesome pediatric NP. She has been seen by more than 10 specialists over her 7 years (including genetics to try to discover a root cause). She suffers daily joint pain, nerve pain due to small fiber neuropathy, dizziness, low muscle tone (including muscles that control her eyes and throat), hypermobility in her joints, and a very slow GI tract (gastroparesis). Her mother works hard to find natural solutions to help combat these problems, but at one point, Amelia was on 7 prescription medications (currently down to 3!!). 

So, this is why we are raising money for Dysautonomia International. It is a terrible illness that sadly, just doesn’t have enough funding or awareness to even begin to find a cure! Dysautonomia International is out to change that and we can help!