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Hello, my name is Franka and I have erythromelalgia
I find it hard to best describe the syndrome, 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 erythromelalgia sufferers!
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 of erythromelalgia 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 stage 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!
There is such poor awareness of erythromelalgia and, without funds, greater awareness and understanding will not be raised.
Loving life and happy before I fell sick with erythromelalgia.
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, they provide invaluable free 24-hour online and offline outreach services world wide.
THEIR 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 independent research.
THEIR VISION: a world where there is greater understanding of EM and where the hope of a cure becomes reality.
This amazing organisation could not sponsor their awareness campaigns and educational projects without fundraisers so this is very important to them , and especially important to me.
I am so grateful to the EM Warriors for all the continued support and information over the years. Fundraising to help them is the best way for me to give back to an awesome organisation and say 'Thank You!'.
God bless you EM Warriors !
MADDY MAD'S BIRTHDAY FUNDRAISER
This year I have organised a birthday fundraiser to cover the production and printing costs for our latest labour of love . Our new erythromelalgia brochure and medical alert cards is twice the size of our current Z brochure and full of management tips, test recommendations , drug protocols, key facts , photos and the latest EM information .
I also would like to cover the shortfall in money needed to cover the production & distribution costs for The Erythromelalgia Warriors Global Awareness Program 2022 and to keep EM Warriors going .
In 2019/2020 , our awareness program distributed over 20,000 free educational materials worldwide.This meant that more doctors, hospitals, schools and clinics are being made aware of our excruciating syndrome.
THE EM WARRIORS GLOBAL AWARENESS PROGRAM 2021
The program distributes free educational materials worldwide.This means that doctors, hospitals, clinics, pharmacies, social workers, health professionals , schools and universities are being made aware of our excruciating syndrome and that there is greater understanding. The materials we provide includes leaflets, posters and information on how to recognise the symptoms of EM , the diagnostic process, patient's best drug options, the patient work up , the importance of identifying which form of EM the patient has, how to go about identifying the form of EM , causes of secondary EM, tests of exclusion , and imperative management strategies.
Clinic in UK that joined our EM awareness program and helping us to raise awareness.
Last year we added schools and universities to the awareness program. With more children and young adults developing erythromelalgia and PEPD , the team and I were greatly concerned about education and whether the EM youngster was being afforded the same opportunities in life as non sufferers. We decided the way forward was to create a greater understanding of erythromelalgia among teachers and fellow students and help caregivers/parents advocate for their child . Apart from leaflets and posters we included information about accommodations, how best to support the EM student and funding. Many parents home school their young EM sufferer but feel strongly that homeschooling should be an alternative based on the personal preference NOT the only option available.
So, as I mentioned , we proudly distributed over 20,000 free ,highly informative eye-catching erythromelalgia awareness leaflets, posters and fact sheets in 15 countries during 2019/2020. We also distributed leaflets on Raynaud's and paroxsymal extreme pain disorder (PEPD), which are both EM -associated conditions. In 2021 we would like to include additional resources such as leaflets on small fiber neuropathy and autonomic neuropathy but this will take even more funding.
As erythromelalgia warriors do not charge a membership, I often get asked how we manage to do what we do and provide all our services free of charge. Well, here is our big secret :) We rely on your donations and fundraising efforts to help sponsor these brilliant educational projects and awareness programs ( and my big smile ;)) .
If I let you know that every leaflet costs us around $5 or £4 with postage , it will give you a better idea of the funds we have to raise.
Without funds we will not be able to continue this vital much needed program
Despite having an extreme form of erythromelalgia and being an advocate for many years , I still find it incredibly difficult to describe this miserable syndrome. I tend to describe erythromelalgia as 'Burning Man Syndrome' and tell others to imagine looking and feeling like they are covered in 2nd degree burns after being doused in oil and set on fire . Then I tell them to imagine adding trophic skin changes, nerve damage , long term systemic effects, chronic fatigue and the unrelenting daily neuropathy to the overwhelming intensity, severity and life- changing chronicity of the pain experienced every single day!
Above is just a small selection of the type of EM-related materials ( leaflets, posters, fact sheets, infographic cards etc.) Erythromelalgia Warriors produce, print and distribute FOR FREE worldwide ( medical professionals, pharmacies, clinics , schools, colleges and universities etc.) to educate and raise awareness of erythromelalgia syndrome
Images of Burning Man Syndrome
Only an estimated 3 in 100.000 develop Erythromelalgia (EM) - a rare neurovascular chronic pain syndrome that can affect any part of the body, including soft tissues and mucous membrane inside the mouth, throat, eyes and genitals. EM can affect internal organs too.
EM causes intolerable localised & widespread burning pain, redness of the skin, swelling, allodynia ( extreme hypersensitivity), pricking, itching, increased skin temperature and severe neuropathy. Many sufferers have autonomic neuropathy and Raynaud's too . Some sufferers burn continuously while others have intermittent episodes or flares that last from hours to days to weeks at a time. Flares can be brought on by a plethora of factors , including heat, stress, fatigue, pressure (shoes, socks, tight clothing), exertion, limb dependency (standing or walking), showering, humidity/barometric pressure, certain foods, stimulants and other conditions. Many triggers are idiopathic .
Erythromelalgia pain is often so intense and incapacitating it impairs our dexterity and robs us of our mobility, leaving many of us housebound , disabled in wheelchairs or bedridden. EM does not discriminate - it can affect new born babies to the elderly, all gender and ethnicity.
Erythromelalgia is such a rare, poorly understood syndrome that most sufferers are left to figure out their own diagnosis. Few doctors have heard of EM let alone recognise its symptoms. No specific medical specialism oversees its care and the majority of sufferers are sent from pillar to post looking for answers.
Discovering that there is no single effective treatment for erythromelalgia hits hard. An EM sufferer resorts to frantically trying one drug after another - often off label drugs that treat other conditions - in a process of trial and error. Every sufferer prays that the new cream, tablet , injection , block or infusion they are about to try will bring them a window of respite and a few hours of relief .
Living with erythromelalgia is life-changing. It is associated with diminished quality of life, functional impairment and social disablement. It has a profound impact on mental health, especially depression and anxiety.
The lack of education and awareness of erythromelalgia is a huge problem!
I cannot bear the thought of others going through the hell I experienced trying to find a doctor that believed me, trying to find a doctor that could diagnose me and trying to find a doctor that would prescribe trial and error treatments, including clinical trials.
Together through donating and fundraising we can make a difference!
Without greater awareness - nothing will change!
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 comorbidity.
A volunteer-led support and information network, we provide invaluable free 24-hour online and outreach services world wide.
To empower lives touched by erythromelalgia by facilitating the tools for self-advocacy
To raise awareness and to promote greater understanding of EM by producing, printing and distributing educational resources
To advance knowledge through developing innovative social media campaigns and sponsoring independent research.
A world where there is greater understanding of EM and where the hope of a cure becomes reality.
THE GLOBAL EM AWARENESS PROGRAM 2021
One leaflet costs $5 or £4 with postage .
We really must meet and surpass the shortfall in funds
Most members tell me that they are extremely grateful for all the personal and general support as well as information they receive and ask what they can do to give back . Well, my birthday fundraiser throughout January is a fantastic way for everyone to give back and help me to raise the money we need to cover the shortfall in funds for the 2021 awareness program
Without awareness nothing will change.
Thank you !
BTW: Don't ask me how old I am. I will only reveal my age if we reach our target ;)
Mads ♥ ♥ ♥ ♥
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