May is erythromelalgia month and the time that we celebrate our yearly fundraiser
You will already know that we do not charge memberships
Everyone who becomes a member of EM Warriors enjoys free solutions focud support, up-to-date information, an extensive research library that contains many articles and papers that are only available through pay -to- view subscription , a doctor's database - updated monthly, access to a range of highly educational EM-related topics, polls and facts not available anywhere else. More importantly, we offer understanding, compassion, solidarity and friendship. I think I speak for all the admin team when I say that it is the love and friendship we receive from all our members that keeps us going ♥
If you have recently joined, you may not be aware that we share and impart knowledge across multiple online platforms and offline outreach services in order to empower lives touched by erythromelalgia and facilitate the tools for self -advocacy. We guide members through the diagnostic process, recommend tests, educate on the best treatment protocols and available clinical trials . We help members prepare for their consultations and even offer a one-to-one email service to discuss and answer questions. We provide management tips and strategies on how best to manage erythromelalgia (and concurrent conditions/ comorbidity) , and even give support calls. We run exciting events where many members have won themselves a t-shirt, hoodie, cooling chillow pillow or towel and many other freebies. We work very hard everyday to provide every single member whether that member is a child or adult, a parent, medical professional or friend with an awesome service , and we want to keep that service free .
Our superb eye-catching awareness material is actually provided free of charge to medical professionals, hospitals etc. and members to distribute .Last year we successfully distributed over 20,000 highly informative erythromelalgia awareness leaflets in 15 countries. We also distributed leaflets on Raynaud's and Paroxsymal extreme pain disorder (PEPD) , both EM -associated conditions. Understandably funds are needed to cover the production and distribution costs so that we can continue this worldwide awareness project .
So, the tables are turned because we now need to ask you to support us :)
Please contribute what you can afford . Donations, however small, add up and allow us to achieve great things.
Our donation links are:
All currencies accepted as well as cards
It is only through awareness and education that we can hope bring about change. It is only through your donations and your support that we can raise the necessary funds to continue our work towards achieving this.
Admin team ♥
As a thank you for your support we will be raffling 3 EM hoodies
Our usual fundraisers and fundraising activities did not take place this year due to Covid-19. As such , we have exhausted our funds and are finding it extremely difficult to continue providing our free support services, educational materials and awareness resources We need to cover printing and distribution costs for our new brochure, new fact sheet on small fiber neuropathy and leaflets for our global awareness project. We need to pay web hosts, outreach postage , keep our research library updated and subsidise our information packs and more.
You will already know that we do not charge memberships nor do we hassle for donations throughout the year - in fact we hate asking for money! But in order to keep going , doing what we do , EM Warriors desperately need funds!
JUST TO SAY THANK YOU! ❤
We are so very grateful for your donations and will be gifting an Erythromelalgia Warriors awareness charity pin or an Erythromelalgia Warriors awareness bracelet with every contribution.
After completing your donation, you will receive an email from us stating your reference number and instructing you on how to order your chosen token pin or bracelet.
BURNING FOR A CURE :EM WARRIORS AWARENESS BRACELET
EM WARRIORS CHARITY PINS: ERYTHROMELALGIA AWARENESS
GLOBAL AWARENESS DRIVE: EXAMPLE OF EM WARRIORS RESOURCES AND AWARENESS RAISING IN A UK CLINIC
(An example of free awareness leaflets packed with important up-to-date information).
EM WARRIORS AWARENESS DRIVE: SCHOOLS, COLLEGES & UNIVERSITIES
Aidan, a courageous little EM Warrior who won a community award for his services to raising EM awareness. He also designed two awesome T-shirts that raise awareness of erythromelalgia in children.
WHAT IS ERYTHROMELALGIA?
Watch our simple factual video to understand what erythromelalgia is and how it affects sufferers
If the video is too fast or slow - change playback speed ( the cog wheel on video says settings)
In 2020, we are setting erythromelalgia sufferers and their families and friends a 3-month challenge to help us raise the necessary funds to continue raising greater awareness and understanding of erythromelalgia through our global awareness project.
This is a fun incentivised fundraiser and anyone can take part. So, starting January, we are asking you to give up something small, such as coffee or a takeaway, and donate the money saved to The EM Warriors Awareness Project instead.
As a form of New Year's and New Era's resolution, you may even want to give up something such as losing weight and make a donation for every kilo or pound you lose. This could be the year that you finally kick smoking or stop being a couch potato and get into a doable exercise routine. You can choose whatever you want in terms of what you give up (or decide to take up) as long as you pledge to donate a certain amount of money to us. To help strengthen your willpower , we have incentivised the fundraiser by added some great rewards :)
DONATIONSThis GoGetFunding page accepts donations via Paypal and Cards. The currency states USD but you can change the currency just by clicking the little arrow > next to the USD text
Donations can also be made directly to our Paypal Make a donation to The Erythromelalgia Warriors
If you choose this option, please ensure that you put the reference: May 2021 fundraiser
THE EM WARRIORS AWARENESS PROJECT
If you are not a member of the EM Warriors then you might not be aware of who we are or that we provide free eye-catching, highly informative leaflets about erythromelalgia to anyone anywhere in the world to distribute in order to help us continue our dedicated mission to raise greater awareness of erythromelalgia. We also provide leaflets on two common EM - associated conditions Raynauds and Paroxsymal Extreme Pain Disorder (PEPD), which are also free of charge.
As our organisation does not charge a membership fee nor hit members up for donations throughout the year ;our big yearly fundraiser is vitally important as it is the only way we raise the monies we need to continuing doing what we do.
All monies raised in this fundraiser will go towards production and distribution costs for 2020.Last year alone our members distributed over 20,000 leaflets in 15 different countries - amazing right? But, we can not continue to run our free awareness project without your support so please rally your family and friends and get involved and please , please donate! .
The awareness project - something extremely important to each and every erythromelalgia sufferer and their loved ones - will be safely funded for 2020.
An example of free awareness materials. They detail important up-to-date information on the back.HAT IS ERYTHROMELALGIA ?
How to best describe the syndrome is hard as words cannot depict how wickedly painful, incapacitating and life- changing erythromelalgia - also known as ‘Man on Fire’, 'Burning Man Syndrome' and 'Suicide Disease' - actually is. Just close your eyes for a few seconds and imagine how it would feel to be set on fire everyday, and nurse 2nd degree burns for the rest of your life. Imagine how it would feel being stung by a thousand angry bees and having tiny shards of glass pricking and stabbing through your veins. Now, multiply that thought by a 100 and you still won't come anywhere close to imagining the excruciating pain experienced by someone who has erythromelalgia .
An estimated 3 in 100,000 develop this 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 an intolerable localised or widespread burning pain, redness (erythema) of the skin, swelling, allodynia (skin sensitivity so it cannot be touched), pricking, itching and increased skin temperature. Some EM sufferers burn continuously while others have intermittent episodes of flaring that can last from hours to days to weeks at a time. Flares are commonly brought on by heat, humidity,stress, fatigue, pressure, activity and exertion but many other triggers: including limb dependency, barometric changes, showering, footwear, socks, wearing tight clothes or man-made fabrics , alcohol, coffee, spices, nightshade foods,other conditions and the extreme cold are involved. Many triggers remain unknown .
The intensity of pain experienced is so severe that it is often disabling; leaving many sufferers housebound, in wheelchairs and/or completely bedridden. EM does not discriminate either; it affects babies, children, adults, all gender and ethnicities.
The first stage for any EM sufferer is figuring out their 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 for years whilst they search for answers.
The second stage is realising that there is no single effective treatment for EM. Sufferers must try one drug after another - often off-label drugs which treat other conditions - in a lengthy trial and error process where they pray that the next infusion, tablet or cream they try will help bring them a few hours of comfort.
The third stage is the struggle they have trying to live with life-changing excruciating burning knowing that there is no known cure!
Fulfilling our mission to raise greater awareness of erythromelalgia is imperative!
It is only through awareness that we can bring about change.
It is only through your donations and your support that we can raise the necessary funds to do so.
Examples of erythromelalgia flares
WHO ARE THE EM WARRIORS?
The Erythromelalgia (EM) Warriors is a dynamic non-profit international organisation dedicated to educating, encouraging and empowering all those living with or affected by erythromelalgia and its comorbidities. We are a volunteer-led support and information network that provides invaluable free 24-hour online and offline outreach services world wide.
- To empower lives touched by erythromelalgia by facilitating the tools for self-advocacy.
- To advance knowledge and raise greater awareness of erythromelalgia by producing innovative online and offline projects and supplying a range of up-to-date educational material
- To develop and distribute erythromelalgia awareness resources
- To sponsor research and support independent projects through fundraising
- A world where there is greater understanding of EM and where the hope of a cure becomes reality.
NOT YET A MEMBER OF THE EM WARRIORS ?
If you are not yet a member , you can join any of our many online platforms
It is free to become a member of our organisation - we would love to meet you!
Examples of erythromelalgia flares