ICE BUCKET CHALLENGE raised over 100 million dollars for ALS research (cross-posting This shows that Facebook is powerful way to get a message out. WE are the first generation of EDSers to ever have access to such a powerful resource! What we need more than money ATM is awareness - for the 100 million plus people who have POTS, dysautonomia and EDS but have never heard of it to learn about it and get a diagnosis. One easy way we can do this is by posting something about Dysautonomia, POTS or EDS on our fb page or on another chronic illness page. This is something we can all do from our phones and laptops - it is free and painless and may help us get a cure quicker once the epidemic proportions of EDSers are noted world-wide. So once - or once a week - post something about EDS or POTS on your fb page or in another illness group. Pictures usually get a lot of interest, so post bendy pics or BP Pulse readings or Beightons score pics. Post a pic of something blue ( POTS/Dysautonomia), or something with Zebra stripes (EDS), mention EDS or POTS/dysautonomia. Maybe throw in a meme or a link if you are up to it and feeling creative. Challenge three POTS, Dysautonomia or EDS friends to do the same. Also if you have an additional diagnosis or symptom join one or more the fb groups that deal with that symptom/illness and post there about EDS or POTS/dysautonomia so others learn too - after all they are there looking for help and answers. Fibromyalgia ME/cfs, POTS, Chronic pain, invisible illness, Hashimotos, GP (gastroparesis), TMJ, RA, Ostoearthritis, migraine. coeliac, allergies, Graves disease, MTFHR gene mutation ...these pages are FULL of people talking about EDS and POTS-like symptoms. (And a lot of EDSeRs do not know about POTS/dysautonomia - and vice-versa.) That way you help raise EDS awareness and also help those in search of an accurate diagnosis. Most people are delighted to learn about EDS/POTS if it fits their symptoms.... and genetic testing is moving quickly now so we can speed things up by making more people aware of it. PS SO far 4 of my fb friends who did not know about EDS have found out they have it from my posting links on my fb page.
Posted on: Tue, 21 Oct 2014 06:45:54 +0000
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