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 !