Dysautonomia is defined as a type of neuropathy affecting the nerves that carry information from the brain and spinal cord to the heart, bladder, intestines, sweat glands, pupils, and blood vessels. Dysautonomia may be experienced in a number of ways, depending on the organ system involved, for example difficulty adapting to changes in posture, or digestive symptoms. Dysautonomia does not produce unique symptoms. It is the set of symptoms, taken together, that suggests that a dysautonomic state is present.
"People who have dysautonomia struggle with some of the most basic functions that people who are healthy take for granted, starting with simply getting out of bed in the morning."
'Dysautonomia,' is an umbrella term used to describe a number of different medical conditions that cause a malfunction of a person''s autonomic nervous system. The autonomic nervous system controls the automatic functions of a person's body that we do not consciously think about such as blood pressure, heart rate, digestion, constriction and dilation of the pupils, temperature control and kidney function. People living with different forms of dysautonomia have difficulty regulating these systems, something that may result in lightheadedness, unstable blood pressure, fainting, malnutrition, abnormal heart rates or even death in severe instances.
Dysautonomia is fairly common; more than 70 million people around the world live with different forms of dysautonomia. People of any gender, race, or age may be affected. There is currently no cure for any form of dysautonomia, although research is being pursued to develop better treatments and hopefully one day, a cure for each form of dysautonomia. Even with the high prevalence of dysautonomia, the majority of people take years to receive a diagnosis because of a lack of awareness among medical personnel and the public at large. Some different forms of dysautonomia include the following.
Multiple System Atrophy (MSA): MSA is a fatal form of dysautonomia that happens in adults age 40 and over. It is a neurodegenerative disorder with some similarities to Parkinson's disease, yet unlike people with Parkinson's, people with MSA usually become entirely bedridden within 2 years of receiving a diagnosis and die within 5-10 years. MSA is considered to be a rare form of disease with an estimated 350,000 people experiencing this form of disease around the world.
Postural Orthostatic Tachycardia Syndrome (POTS): POTS is estimated to impact 1 out of 100 adolescents as well as adults for a total of 1,000,000 to 3,000,000 people in America. POTS may cause lightheadedness, fainting, chest pains, tachycardia, GI upset, shortness of breath, exercise intolerance, shaking, temperature sensitivity and more. While POTS largely impacts young women who appear to be healthy on the outside, researchers compare the disability witnessed in POTS to the disability seen in conditions such as congestive heart failure or COPD.
Neurocardiogenic Syncope (NCS): NCS is the most common form of dysautonomia. It impacts tens of millions of people in the world today. A number of people with NCS have a mild case with fainting spells once or twice in their lives. Some people; however, have severe NCS which results in fainting a number of times each day, something that may lead to falls, broken bones and at times, traumatic brain injury. People with moderate to severe NCS experience difficulty with engaging in school, work and social activities because of the frequent fainting attacks.
Dysautonomia may also occur secondary to other forms of medical conditions such as multiple sclerosis, diabetes, celiac, rheumatoid arthritis, lupus, Sjogren's syndrome and Parkinson's disease.
At this time there is no cure for dysautonomia, yet secondary forms might improve with treatment of the underlying disease. There are some treatments available to improve an affected person's quality of life, both with medications and lifestyle changes, but even using all treatments currently available, a number of people with dysautonomia experience disabling symptoms that significantly affect their quality of life.
To achieve a diagnosis of dysautonomia, a tilt-table test is often performed. The test evaluates how the person regulates blood pressure in response to simple stresses. Tilt-table testing involves placing the person on a table with a foot support. The table is tilted upwards while different machines monitor the person's blood pressure, oxygen levels and electrical impulses in their heart. What follows are diagnostic terms that might be issued to children with forms of dysautonomia:
The symptoms of dysautonomia are usually invisible to an untrained eye. The manifestations are occurring internally and while the symptomatic are verified medically, they are often times invisible on the outside. Symptoms may be unpredictable; they may come and go, appear in any combination, or might vary in severity. Many times, people will become more symptomatic after being exposed to heat, stressors, physical activity, or excitement. People may find themselves involuntarily limiting their lifestyle activities and isolating themselves in order to compensate for the conditions.
Dysautonomia conditions are largely unknown to people in society at large.
Due to this, there exists a great ignorance concerning these conditions. Most people do not realize the impact these conditions have on people who are affected and their family members. People who have dysautonomia struggle with some of the most basic functions that people who are healthy take for granted, starting with simply getting out of bed in the morning. Every day and moment brings new and unexpected obstacles to face.
Fortitude, determination and tenacity are traits that are entirely necessary for coping or obtaining any level of recovery. Despite the betrayal of a body that is uncooperative, the most persevering people tend to face life with profoundly notable strength and courage. When provided with an appropriate support system and responsible medical care, most of the young people with dysautonomia have the ability to go on to become productive participants in society and lead full and successful lives.
Turquoise is the awareness ribbon color for Dysautonomia, and the month of October is Dysautonomia Awareness Month. Dysautonomia refers to a group of disorders that affect the unconscious functions of the nervous system, such as heart rate, blood pressure, digestion, and breathing.
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