Faces Of The Spoons Project
We are currently gathering stories and photos from our participants.
This project puts faces to Dysautonomia and Postural Orthostatic Tachycardia Syndrome (POTS) in order to spread awareness. These are only a couple of, what is known as, invisible illnesses. You can not visibly "see" that something is wrong, but they have a great impact on those who live with them. We hope that you get a clearer picture of these illnesses by reading their stories.
Spoons? Why Spoons?
The spoon theory or spoon metaphor is a disability metaphor (for a combination of ego depletion, fatigue, and other factors), a term used to explain the reduced amount of mental and physical energy available for activities of living and productive tasks that may result from disability or chronic illness. Most people have unlimited "spoonfuls" of energy each day, but for someone living with chronic illnesses, they are limited. If they try to keep up with you, then it will cause a "flare" of symptoms. Considering dysautonomia affects the Autonomic Nervous System, this can be dangerous.
What is dysautonomia?
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, 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 in severe cases, death.
Dysautonomia is not rare. Over 70 million people worldwide live with various forms of dysautonomia. People of any age, gender or race can be impacted. There is no cure for any form of dysautonomia at this time, but Dysautonomia International is funding research to develop better treatments, and hopefully someday a cure for each form of dysautonomia. Despite the high prevalence of dysautonomia, most patients take years to get diagnosed due to a lack of awareness amongst the public and within the medical profession.
POTS is estimated to impact 1 out of 100 teenagers and, including adult patients, a total of 1,000,000 to 3,000,000 Americans. POTS can cause lightheadedness, fainting, tachycardia, chest pains, shortness of breath, GI upset, shaking, exercise intolerance, temperature sensitivity and more. While POTS predominantly impacts young women who look healthy on the outside, researchers compare the disability seen in POTS to the disability seen in conditions like COPD and congestive heart failure.
Credit: Dysautonomia International (View Here)