I recently filled out an application to attend/speak at the 10th Annual Patient Summit USA conference. They were looking for speakers on “Rare Diseases” – I blog about Autonomic Nervous System Disorders (sometimes called “dysautonomia,” even though that nomenclature is not widely used here in the US), and I do think it is a rare group of diseases, as does the NIH and The Rare Disease Clinical Research Network. (I also blog about a few other conditions, as well as doctor-patient communication, but that doesn’t matter right now.)
My current passion is to bring attention to the fact that there are MANY forms of ANS dysfunction, not just the one that gets all the attention – POTS – that literally all of the patient support sites seem to rally around. Perhaps it is because POTS tends to effect attractive young women after a growth spurt. Many of the current ANS disorder “activists” that rally around POTS publicly admit that they do NOT know much about ANS disorders as a whole, and therefore, only talk to the public about POTS. By doing so, they are completely ignoring the patients of the other 30 or so types of ANS disorders! Also, what they DON’T share, is that POTs symptoms often subside as their bodies adapt to the rapid growth, and go on to live fairly normal lives. In fact, many POTS patients have sports teams!! (While those of us with other types of autonomic dysfunction can barely walk around our homes…) To present POTS as THE FACE of “dysautonomias” (or more appropriately, “Autonomic Nervous System Disorders”) is to present information that is deceptive to the audiences that need to be reached to raise awareness of the body of disorders. It is certainly not the most devastating or life-altering ANS disorder. People NEED to know about ALL of these conditions. What needs to be be made clear is that most of us with ANS disorders DO NOT get better (as do many of the young POTS crowd). We get WORSE. We can DIE from complications related to the destruction of our autonomic nervous system – the system responsible for making us breathe, making our heart beat, making our blood circulate, and making our digestive process work as it should.When these systems stop working properly – the body can’t sustain itself.
This body of disorders is so hard to diagnose (according to the specialists in the field), and is so unfamiliar to the medical community, that it is near impossible to find a doctor that knows how to diagnose or manage a patient with an autonomic nervous system disorder that is not the glamorized POTS or secondary to Parkinson’s disease or diabetes. Even the so-called Autonomic Disorders Treatment Centers in the US (there are 5 that are linked) do not test and treat everyone with some form of the disorder. I am unlucky enough to have a form of ANS dysfunction that the Boston center doesn’t treat/handle, and I am forced to expand my search outside of the Boston area to find someone to treat me. (Contrary to popular belief, Boston is NOT the cutting edge “medical mecca” it is rumored to be.)
I have a medical/science education and background, and I am an very experienced in researching medical issues using sources that are valid and peer-reviewed, not the consumer-focused platforms most of the more outspoken activists for “dysautonomia’ (actually, just POTS) seem to reply upon. My medical background allows me to understand the systems affected by this body of disorders and explain how these disorders affect our bodily functions. I have no underlying motive that would make me personalize the information as others have done (seemingly to glorify one’s daughter or young relative that has a POTS diagnosis and generate sympathy and funds for their sports endeavors…)
A significant amount of “confirmation bias” is evident in the information currently being presented to the public, which is extremely detrimental to the goal of educating not only laypersons, but medical professionals that have never even heard of these conditions. Every nurse, medical assistant, ER physician, gastroenterologist, cardiology technologist and nuclear medicine professional that I have met in the past six months had never even heard of Autonomic Nervous System Disorders!! This meant that I spent my last three hospital stays educating every single professional I had contact with – ludicrous! If I had not done so, I would have been given medications contraindicated for a person with my condition, and treated with measures inappropriate for my condition.
What scares me is this: what happens when someone that is NOT a skilled researcher with a medical background develops an ANS disorder? Such a patient would not have the ability to advocate for themselves, nor would they know that they HAVE TO do just that since the medical profession is not at all familiar with these diagnoses.
It is frightening what could have happened…and what COULD happen if awareness of ANS disorders remains ethereal, as it is now.
Well, I didn’t intend to launch into a diatribe….I apologize for rambling on. I guess it just show how passionate I am about getting the word out about these disorders to medical professionals. I don’t ever want anyone to suffer through what I have had to endure – and my ANS disorder isn’t anywhere as severe as many other types – I just don’t want to see people with these issues get misdiagnosed and receive improper treatment – no patient should have to go to the ER armed with printouts explaining their condition to staff that seems to think you are making the whole thing up! Medical professionals should be aware that these conditions exist – and they should learn how to do a bit of proactive medical research themselves – it takes less than 30 seconds to pull up a journal article abstract explaining ANS dysfunctions on any of the many computers and tablets present throughout our ERs. No one should be questioned in the humiliating and disbelieving manner in which I was when I was trying to explain to the ER staff WHY I was there and what condition I have. It shouldn’t be happening in the 21st century. Not here in the U.S.
Do the thing you fear and the death of fear is certain. — Ralph Waldo Emerson