I would love members to give ideas of things we could do to raise awareness of the existence of EM, the symptoms and the effect it has on the lives of those who have it. I was horrified to read of members with severe EM being denied benefits, I've had this experience myself.
I am also haunted by a guy I saw on a BBC documentary several years ago. It was a programme about people with problems sleeping, this man showed all the classic signs of EM, he couldn't bear the covers on his feet, he would stand on cold floors, use cold water or ice. He'd been diagnosed with Restless Leg Syndrome. My father (a doctor) had seen the programme and called me, we both thought this poor guy had EM, and I was so upset I phoned the BBC to beg them to tell this poor man about EM and to suggest his doctor look at it as a diagnosis. I could tell from the call handler's tone that it wouldn't happen, it would be put down to a crazy person diagnosing everyone on TV with different diseases.
We need to get EM better known. It might be rare, but so are other well known diseases. So come on, give your ideas of how we can let the world know that we exist!
Yes, the lack of knowledge and awareness out there is and obvious issue. Unfortunately this is the case for many other diseases too. Also, all patients seem so spread out around the globe (I don't know of anyone in The Netherlands yet) - it is hard to get everyone to strive for the common cause.
The other day I saw this video on youtube: http://www.youtube.com/watch?v=wXKqniqDEhU . Although the disease is different for everyone, this is good stuff to raise awareness.
My sister's boyfriend is going to run a marathon for the Dutch ZZF - the funds for rare diseases.... Stuff like that may help too.
Yes I know those bands, they raise money for The Erythromelalgia Association (which I'm a member of). We may need to do something similar, perhaps a red band with the "foot on fire" symbol and our website address.
Jayne Nelson said:
My wonderful friends have been selling bracelets to raise money and awareness for EM research - my whole family wear these bands!