So I know I mention from time to time how I personally manage a lot my dysautonomia, POTS, and EDS symptoms holistically, but with Giving Tuesday an anonymous donor has offered to match all donations made to Dysautonomia International up to $20,000. That is a HUGE deal!
Very little is known about dysautonomia and research is needed. I am very fortunate that I have found holistic ways to manage the illness, but it still affects my life every day. The picture below is during one of my saline infusions. (Trust me, I’d never post this picture if it wasn’t for a good cause!) I have these before doing anything that will be taxing to my body to increase blood volume temporarily. I could do them weekly or even more frequently, but I don’t want to spend my life in a treatment facility. I would rather live my life to the fullest (even though I may have a few more limitations than I used to)
Today is #GivingTuesday. Dysautonomia International is asking everyone to take #UNselfie photos letting the world know why we need dysautonomia research, education and advocacy. Print out your #UNselfie flyer and donate here:www.dysautonomiainternational.org/GivingTuesday
A bit about Dysautonomia from www.dysautonomiainternational.org :
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.
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.
Postural Orthostatic Tachycardia Syndrome (POTS) – estimated to impact 1 out of 100 teenagers and a total of 500,000 to 3,000,000 Americans. 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 look healthy on the outside, researchers compare the disability seen in POTS to the disability seen in conditions like COPD and congestive heart failure.
Neurocardiogenic Syncope (NCS) – 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.
Multiple System Atrophy (MSA) – MSA is a fatal form of dysautonomia that occurs in adult ages 40 and up. It is a neurodegenertive disorder with some similarities to Parkinson’s disease, but unlike Parkinson’s patients, MSA patients usually become fully bedridden within a 2 years of diagnosis and die within 5-10 years. 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.1,3
There is currently no cure for dysautonomia, but secondary forms may improve with treatment of the underlying disease.4There are some treatments available to improve quality of life, both with medications and lifestyle changes/adaptations, but even using all treatments available, many dysautonomia patients experience disabling symptoms that significantly reduce their quality of life. 1, 2, 3, 4, 5″
If you have dysautonomia, I am hosting a free webinar on ways I have found to naturally manage the symptoms involved Tuesday, December 16. You can register here
Dysautonomia not only affects the lives of those who have it, but also their families and friends. If you are looking for a cause that desperately needs research and support, please consider Dysautonomia International!
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