SUSAN KAYLOR'S BIRTHDAY FUNDRAISER
This year, I am asking fellow erythromelalgia sufferers, family and friends to please donate to my birthday fundraiser to help me raise money for The Erythromelalgia Warriors. The funds I raise will be designated towards the costs of printing and distributing awareness materials for the medical community and to also help with the miscellanous expenses incurred in keeping up with Facebook / e-mail and other correspondence .
I have Erythromelalgia yet I still find it hard to describe the syndrome, also known as ‘Man on Fire’, 'Burning Man Syndrome' and the 'Suicide Disease' Just imagine being set on fire every day for the rest of your life or having acid poured over you. Multiply that excruciating thought by a 100 and you still won't come anywhere close to imagining the level of 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 intolerable localised & widespread burning pain, redness of the skin, swelling, allodynia, pricking, itching, increased skin temperature and neuropathy. Some sufferers burn continuously while others have intermittent episodes of ‘flaring', which can last from hours to days to weeks at a time. Flares can be brought on by heat, stress, fatigue, pressure and exertion, e.g. standing or walking. Many other triggers are unknown (idiopathic).
Erythromelalgia pain can be so intense and extremely disabling, leaving many sufferers housebound, in wheelchairs and/or completely bedridden. EM does not discriminate, affecting babies, children, adults, all gender and ethnicity.
Most EM sufferers are left to figure 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 searching for answers.
Discovering that there is no single effective treatment for EM hits hard. Sufferers must try one drug after another - often off label drugs that treat other conditions - in a process of trial and error. With every new cream, tablet , injection or infusion every sufferer prays something will help bring them a few hours of respite.
Living with erythromelalgia is life-changing and a struggle, especially since there is a lack of awareness and no cure!
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.
THE EM AWARENESS PROGRAM
The EM Warriors awareness program distributes free educational resources worldwide.This means that sufferers and their loved ones, doctors, hospitals, schools, clinics and even pharmaceuticals are all being made aware of this devastating and excruciating syndrome. They are being informed of the diagnostic process, the optimal drugs , the necessary tests and work- up patients should receive and also how best to quickly and effectively manage erythromelalgia.
Last year they successfully distributed over 20,000 highly informative erythromelalgia awareness leaflets in 15 countries. They also distributed leaflets on Raynaud's and Paroxsymal extreme pain disorder (PEPD) , both EM -associated conditions, and have other resources in the pipeline. Understandably funds are required to cover both the production and distribution costs of this very successful global awareness program.
Without funds, greater awareness will not be raised and this amazing organisation could not sponsor these brilliant educational projects and awareness programs
I am so grateful to the Erythromelalgia Warriors for all the continued support and information I receive.
My birthday fundraiser is simply a lovely way for me to say thank you by giving back.
Thank you EM Warriors ! 💗💗💗💗