Exciting news! I got to write and “perform” a speech for a class that I’m in, on a subject of my choice. So guess what I chose? Dysautonomia awareness and research funding, of course. Yay! So naturally, due to the nature of this work of art, if I do say so myself, I thought I’d share with you all! I’m quite proud of it, since it absolutely had the desired affect of shock and awe. Nobody in the class knew what hit them! Not one person knew what Dysautonomia was until I told them, which made it actually rather interesting for me to see their reactions to the statistics you’re about to read.
Beyond all that, I think the speech will “speak” for itself. (pun intended)
Thank you to the members of the Department of Health, who have allowed me the time to speak to you all today. I came to you with the intention to increase your awareness of an illness currently affecting an estimated 1 to 3 million Americans.
Dysautonomia is an umbrella term for a malfunction of the autonomic nervous system. This can manifest as many different disorders, as the autonomic nervous system controls many of the body’s involuntary functions, such as digestion, muscle impulse, blood pressure and heart rate regulation, breathing, and much more. Some of the most common disorders include Postural Orthostatic Tachycardia Syndrome, Ehlers- Danlos Syndrome, Gastroparesis, and peripheral neuropathies, all including symptoms of gastrointestional upset, fainting, chest pains, shortness of breath, and more. To quote the leading advocacy and awareness group, Dysautonomia International, “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 rehearch to develop better treatments, and hopefully someday a cure for each form of dysautonomia.” This is why we need your help.
When compared to other disorders and diseases receiving funding for research from the National Institute of Health, Dysautonomia receives only pennies. MS, which affects 400,000 people receives 100million dollars per year in research funds, equating to $250 per person. Parkinson’s, which affects 1 million people receives 156 million dollars every year to go toward the development of treatment, resulting in a contributed $156 per person. Postural Orthostatic Tachycardia Syndrome, the most common and prominent form of dysautonomia, affecting 3 million Americans, receives less than 1 million dollars per year from the NIH. That’s less than 33 cents per person- not even a fraction of what other disorders, affecting far less people, receive. The NIH publishes a list of its categorical spending, listing its contributions to the research of 244 areas. Not a single form of Dysautonomia makes the list, despite the fact that it is estimated to impact 1 out of every 100 teenagers, and there have been 70 million cases reported worldwide as of last year. This is pitiful, knowing that the suffering of patients with Dysautonomia has been compared to the disability seen in conditions like COPD and congestive heart failure.
I come to you with a passion for awareness and for a change in this extreme lack of research funding not only because of this egregious lack of awareness of something so negatively affecting so many Americans, but because I am one of those who have been impacted by this disorder. I have experienced the symptoms of fainting and severe muscle cramping and spasms. I have been unable to walk because of the pain and fatigue from fighting, but now I can stand again, and I am taking a stand for those so affected that they are unable to do so for themselves.
What we are asking for is a cure. A lofty goal, yes, but nothing is impossible with appropriate funding, and I’m sure we’d all agree that 33 cents per patient is a completely inappropriate amount. I am asking you today to raise our research funding by only 10 dollars per person, per year, making next year’s funding only $10 million: Still a small fraction of the money given to the research and development of treatment for other disorders.
Due to the current numbers of reported cases of Dysautonomia, everyone in this room will be affected by this at some point in their life- whether themselves, a loved one, or a friend of a friend, but no matter the degree of separation, all I ask of you is to give thought to funding appropriation that could end the suffering of a stranger or a friend.
Thoughts? Comments? Share with me!!
As always, If there’s anything in here so far that you can identify with, keep reading as I post. If you can’t relate, but want to read more about my journey as I carry on, keep reading. If not, then I hope you learned something about POTS.
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To all my fellow Potsies, good luck out there!