October is a popular month for awareness and fundraising for health-related causes. Each cause has a color and now turquoise can now be added to the mix. The new kid on the block, so to speak, turquoise represents a malady for which there is no cure and not much is known.
Therein may be the rub to engender Dysautonomia Awareness this October.
Dysautonomia, an abnormality of the autonomic nervous system, is labeled “the invisible illness.” The tag to heighten awareness therefore is quite telling: “Just because you don’t see it, doesn’t mean it doesn’t exist.”
Dysautonomia does not meet the eye the way a physical disability would, or provide reliable clues as to what exactly it is that ails the sufferer.
Over 70 million around the world are afflicted by the ailment, reports Dysautonomia International, an advocacy organization founded in 2012.
According to the organization, many physicians, who lack awareness of problems of the autonomic nervous system, are apt to make incorrect diagnoses from Chronic Fatigue Syndrome or anxiety to epilepsy or a migraine condition or something else.
“Doctors are trained to first consider obvious, common ailments before delving into the abstruse,” claims health advocate and blogger Kevin Williams. “Make no mistake … dysautonomia is a complex mystery to the average physician.”
Until a few decades ago, sufferers of dysautonomia were diagnosed with neurosasthenia, a psychological disorder marked by easy fatigability and lack of motivation. Mostly dismissed by family members and physicians alike as having a psychosomatic or imaginary illness, they were often accused of making it up or just being lazy. They were derided as hypochondriacs.
“When patients have the audacity to complain of symptoms without providing the objective medical findings to back them up, they are often written off as being hysterical,” says Richard N. Fogoros, a Pennsylvania-based cardiologist and researcher in dysautonomia.
The autonomic nervous system, part of the peripheral nervous system, is responsible for regulating involuntary body functions such as blood flow, heartbeat, digestion, breathing, and sexual arousal. This system is sub-divided into two branches: The sympathetic and parasympathetic nervous system. While the former acts as a mechanism for thrust, or “fight or flight,” and speeds up the heart rate and increases blood flow to muscles, and so forth, the latter serves as a counterforce, or drag, and slows the heart rate and breathing, reduces blood flow to muscles and constrict the pupils. The catchy phrase for the parasympathetic system is “rest and digest.”
Sometimes these systems don’t function as they’re intended.
Symptoms differ widely, claims Dr. Fogoros in an article published in Verywell, an online lay journal on health and wellness. “[D]ysautonomia can be quite disabling,” he adds, “[and] the symptoms are usually far out of proportion to any objective physical or laboratory findings.”
Symptoms include excessive fatigue and weakness, nausea, vertigo, passing out, and problems of muscular coordination, which can be brought on by a myriad of factors like changes in climate or temperature, or excessive exercise. For example, engaging in a sport can result in a bout of profuse sweating, vertigo, and nausea, which require the sufferer to lie absolutely still until the episode passes, which could be a few minutes to a couple hours.
One manifestation of Dysautonomia is called Postural Orthostatic Tachycardia Syndrome (POTS), which prevents the body from adjusting to changes. This can be characterized by excessive heart rate when getting up or other changes in position. Similarly, persons with POTS can be characterized as having episodic drops in blood pressure or heart rate, or both, that cause fainting. Other autonomic dysfunctions, described by Dysautonomia International, include visual disturbances, neck and chest or muscle pain, loss of balance, difficulty moving, and loss of motor skills.
The organization states there is no known cause or cure for dysautonomia. Some experts hypothesize that some people carry a gene that can be triggered at some point, and that it runs in families. Viral illnesses, chemical exposure, and trauma are believed to also be a trigger for dysautonomia. Except for a rare form called Multiple System Atrophy, which resembles Parkinson’s disease, Dysautonomia is not considered fatal.
Most people with symptoms would qualify as having a disability under the ADA (American with Disabilities Act), says Dysautonomia International.
The ratio of women to men with the illness is more than 4 to 1. No one knows the reason for this.
Dysautonomia International adds that the prognosis for dysautonomia revolves around lifestyle adjustments. Though some medications are known to help some patients, it is generally held that some—especially young—sufferers will outgrow their symptoms. However, most patients can expect to live with the disorder for the duration of their lives. That means a combination of diet and exercise and drinking plenty of water. A tangible benefit might be just to know that what ails the sufferer has a real name.
You can find more about Dysautonomia Awareness here.
Timothy Wahl’s experience in business, education, the sciences, and the arts gives him a unique platform on a spectrum of subjects.
