How do we educate public on autonomic disease,kids take biology they go to college,they become medical Drs, Nurses shcool nurses,"I have autoimmune disease one education teacher said,"my child has autonomic dysfunction" oh well " she said chronic ebv not enough rest no one understood. Educate from the youngest so we have a more compassionate and understanding community ahead of us Can You do this?
One way you might want to educate is try to explain their autonomic dysfunction in words that someone who doesn't understand what it is might understand better. Like what a doctor told me when he told me I had P.O.T.S..... your heart is racing to maintain your blood pressure when you stand so you don't pass out.
Thanks for reply,I do not know how severe your Dyst.is but true dysautonomia is a terrible disabling disease.Dr felicia Axelrod in NYC Treats a certain jewish community and there symptoms are severe.
Mild is dysfunnction,and that is where the miscommunication lies.Maybe writing an article,besides internet I thought that this morning.Good Luck,Mothersunite
The distinction between familial dysautonomia and non-familial dysautonomias is not a distinction between "true" disautonomia and "mild dysfunction." I hope that I can dispel this confusion for you and anyone reading your posts right now, as this is grave misinformation.
Familial dysautonomia, also known as Riley-Day syndrome, is as you alluded seen primarily in Jews of Ashkenazi descent (because the carrier frequency for the gene is much higher in Ashkenazi Jews than in non-Jewish individuals). It is present from birth and carries complications which may be life-threatening. It is extremely rare (with cases numbering in the low hundreds worldwide currently). I would never want to minimize the seriousness of FD, but I also want to keep in perspective that it cannot be considered the only "true" dysautonomia...
Non-familial dysautonomias are numerous and run the gamut from life-altering to fatal. One of the non-familial dysautonomias, multiple systems atrophy is rapidly progressive and generally fatal in under 10 years from onset of symptoms. Other non-familial dysautonomias may not be fatal, but may have a profound impact on quality of life in severe cases. Patients with non-familial dysautonomias of various types may be bed-ridden, reliant on home health care or nursing home care, need IVs/PICCs/ports, need tube feeding or even TPN from time to time, need respiratory support at times, need catheters, etc. In short, the list of complications that can arise from dysautonomias is long and serious.
I'm sorry if my tone comes off a bit curt in this post, but I do want to be direct. Not all non-familial dysautonomias are gravely serious, but many are a far cry from "mild dysfunction."
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