Please join the Red Hand Challenge and help us support research into the excruciating burning syndrome erythromelalgia.
WHAT IS ERYTHROMELALGIA SYNDROME?
How can we best describe erythromelalgia, also known as ‘Man on Fire’, 'Burning Man Syndrome' and 'Suicide Disease'? Well... Imagine being burnt alive every day for the rest of your life, being stung by a million bees or having acid poured on your skin. Multiply that thought by a 100 and you still won't come close to imagining the excruciating pain experienced by a erythromelalgia sufferer!
Only 1 in 100.000 develop erythromelalgia (EM), a rare neurovascular chronic pain syndrome that can affect any part of the body, even inside the mouth, throat, eyes and genitals. It can affect internal organs too.
EM causes localised & widespread excruciating, intolerable burning pain, redness (erythema) of the skin, swelling, allodynia, pricking, itching and increased skin temperature. Some sufferers burn continuously while others have intermittent episodes of ‘flaring', which can last from hours to days to weeks at a time. Flares are mostly brought on by heat, stress, fatigue, pressure and exertion, e.g. standing or walking. Other triggers are unknown (idiopathic).
EM pain can be so intense that it is often extremely disabling, leaving many sufferers housebound, in wheelchairs and/or completely bedridden. EM does not discriminate either, affecting babies, children, adults, all gender and ethnicities.
The first stage is figuring out your own diagnosis. Erythromelalgia is such a rare, poorly understood syndrome that few doctors have heard of it or recognise its symptoms. No specific medical specialism manages its care and patients are sent from pillar to post searching for answers. The second is realising that there is no single effective treatment for EM. Sufferers must try one drug after another - drugs which treat other conditions - in a trial and error process where they pray that they will find a tablet or cream to help bring them a few hours of comfort. The third is the struggle to live with the life-changing excruciating burning knowing that there is no cure!
Scant research is available on erythromelalgia and, without funds, little will be performed.
WHO CAN TAKE PART?
EM sufferers and non-EM sufferers should challenge someone to take the Red Hand Challenge OR take the Challenge themselves.
HOW TO GET INVOLVED
1. If you are Challenged:
Once you've been nominated, you have 24 hours to do the Challenge. If you refuse the challenge, which is an option, you must donate $15 dollars/£10 or more.
2. Non EM sufferers :
Now that you've accepted your Red Hand Challenge, you’ll need the following:
- Red Paint (non-toxic and usually available at craft stores) - or get creative and use anything you'd like from ketchup, finger paint, washable markers, etc. Have fun with it! It will Inspire others.
- Paper plates (one to smear or roll-on your paint and another for your hand print).
- Take a video or photo of your red hand print.
3. EM Sufferers:
Now that you've accepted your Red Hand Challenge, you can do the following:
- Use non toxic paints or ketchup etc. to do a hand print
- Take a photo or video of your hand in flare instead .
- Take a video or photo of your hand print or flaring hand.
4. Take a photo or video
Everyone who has taken the Challenge should take a photo or a video of their Red Hand hand print or flaring hand.
SENDING US YOUR PHOTOS AND VIDEOS
After taking your Red Hand photo and/or video there are four different ways to send them into us. Choose the method that's easiest for you:
a) Email it to [email protected] and we will upload it for you.
b) Post it on our Red Hand Challenge Event Page On Facebook and type #redhandchallenge and #emwarriors along with the post
c) Larger files and MP4s will routinely be sent via Google drive. Just send us an email with the link so we can download if you send a video to [email protected]
HOW DO I CHALLENGE SOMEONE?
Contact them to tell them that they have been nominated and that they have 24 hours to complete the Challenge. If they refuse the challenge, which is an option, they must donate $15 dollars/£10 or more as a forfeit.
I WOULD RATHER FORFEIT!
If you would prefer to pay a forfeit than take the Red Hand Challenge that's cool too. We are trying to raise as much money as we can this year.
Minimum forfeit is $15 or £10 but please give more if you can.
Please pay your forfeit using this page's Gogetfunding donate button , or via our website donations page at http://erythromelalgiawarriors.ning.com/giving-back
CAN I JUST MAKE A DONATION TO RESEARCH INTO ERYTHROMELALGIA?
Yes, of course! Just go to http://erythromelalgiawarriors.ning.com/giving-back or use the Gogetfunding donate button on this page and give what you can. All donations, whatever the size, are greatly appreciated.
(Remember to tell us your name and email address so that we can add you into our free monthly draw).
WHY ARE WE USING THE IMAGE OF A RED HAND?
The red hand is a symbolic representation of the excruciatingly painful burning flares suffered by an erythromelalgia patient.
These red hot burning flares can be localised to 2-3 areas of the body or widespread , causing pain in multiple areas of the body,including the face, genitals and internal organs.
If you have any questions about recording, attaching or sending your videos or photos, please contact us.
WHAT HAPPENS TO THE MONEY THAT GETS FUNDRAISED?
All challenge forfeits and donations are for desperately needed research into erythromelalgia and will be shared between two erythromelalgia organisations at the end of the campaign. The Erythromelalgia Warriors www.emwarriors.org and www.erythromelalgiawarriorsorganisation.org.
Closing date is December 31st, 2018.
WHAT HAPPENS TO THE RED HAND VIDEOS AND PHOTOS?
All your photos and videos will be posted on our event page on Facebook and used creatively in the awareness campaign and on assorted awareness products.
We also ask that you post your Red Hand video and photo on your FB page and anywhere on the Internet with the hashtag #RedHandChallenge and #emwarriors somewhere in your post.
FREE MONTHLY GIVEAWAY
As an extra 'thank you' for donating and challenging, we have freebies to give away during the campaign. Make sure you give us your name and email and check our Facebook page for a list of the winners!
WHO ARE THE EM WARRIORS?
The Erythromelalgia (EM) Warriors are a dynamic non-profit international organisation dedicated to educating, encouraging and empowering all those living with or affected by erythromelalgia and its comorbidities.
A volunteer-led support and information network, we provide invaluable free 24-hour online and outreach services worldwide.
· Our Mission: to empower lives touched by erythromelalgia by facilitating the tools for self-advocacy and to raise awareness and to promote understanding of EM by developing innovative social media campaigns and educational resources, and sponsoring research.
· Our Vision: a world where there is greater understanding of EM and where the hope of a cure becomes reality.
We truly could not raise money to sponsor research into erythromelalgia or raise awareness of erythromelalgia without your participation in this campaign.
Thank you from all of us! ♥
DON'T FORGET THAT MAY IS ERYTHROMELALGIA MONTH!
A special acknowledgement goes out to Youmna and 10 year-old Lynn (our inspirational fire princess) who came up with the red hand concept as a symbol for the burning body parts of an erythromelalgia sufferer.