The first Dysautonomia Awareness Month was launched in October 2012 by Dysautonomia International.
Dysautonomia is an umbrella term used to describe several different medical conditions that cause a malfunction of the Autonomic Nervous System.
The Autonomic Nervous System controls the “automatic” functions of the body that we do not consciously think about, such as heart rate, blood pressure, digestion, bladder function, respiration, dilation and constriction of the pupils of the eye, kidney function, and temperature control.
People living with various forms of Dysautonomia have trouble regulating these systems, which can result in lightheadedness, fainting, unstable blood pressure, abnormal heart rates, malnutrition, and much more. Symptoms will vary between individuals, and can change over time.
Although there is no cure for any form of Dysautonomia at this time, various organisations are funding research to develop better treatments and outcomes for those effected.
Secondary forms may improve with treatment of the underlying disease (if this is possible). There are some treatments available to improve quality of life, both with medications and lifestyle changes/adaptations. However, even using all available treatments, many people with Dysautonomia experience disabling symptoms that can significantly impact their quality of life.
Most people with Dysautonomia take years to get diagnosed due to a lack of awareness amongst the public and within the medical profession, which is why coming together to raise awareness in October is so meaningful.
The prevalence of POTS in the UK is estimated to be 2 in 1,000. It is a diagnosis which is thought to be missed frequently by medical professionals, so may actually be more common that the numbers suggest. POTS is five times as common in women as it is in men. It can occur at any age but is most common between the ages of 15 and 50.
POTS can cause lightheadness, fainting, tachycardia, chest pains, shortness of breath, GI upset, shaking, exercise intolerance, temperature sensitivity and more. While POTS predominantly impacts young women who may look healthy on the outside, researchers compare the disability seen in POTS to the disability seen in conditions like COPD and congestive heart failure.
NCS is the most common form of Dysautonomia, NCS impacts tens of millions of individuals worldwide. Many individuals with NCS have a mild case, with fainting spells once or twice in their lifetime. However, some individuals have severe NCS which results in fainting several times per day, which can lead to falls, broken bones and sometimes traumatic brain injury. Individuals with moderate to severe NCS have difficulty engaging in work, school and social activities due to the frequent fainting attacks.
MSA is a form of Dysautonomia that occurs most often in adult ages 40 and up. It is a neuro-degenerative disorder with some similarities to Parkinson’s disease. MSA is progressive (meaning that the symptoms typically to get worse with time and disease progression). MSA is considered a rare disease, with an estimated 350,000 patients worldwide.
Dysautonomia can also occur secondary to other medical conditions, such as diabetes, multiple sclerosis, rheumatoid arthritis, celiac, sjogren’s syndrome, lupus, and Parkinson’s. Dysautonomia and POTS are common comorbidities of the Ehlers-Danlos Syndromes (a connective tissue disease). See Amy’s story to hear her discuss the impact of these conditions on her life.
Put 25th October 2022 in your diaries, and get ready to ‘light up purple’ in support of POTS UK. You may notice a building in your city (and even internationally!) lighting up purple to mark the event.
Click here to Print out the 10 Facts About Dysautonomia flyer (by Dysautonomia UK) and share it with your community to help raise awareness!
Written by Ellie Ewbank