Franka’s Birthday Erythromelalgia Fundraiser

FRANKA’S BIRTHDAY FUNDRAISER FOR ERYTHROMELALGIA

Hello Friends, please help me raise money for the EM Warriors awareness project by donating to my birthday fundraiser.

I have Erythromelalgia and 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 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!

There is little awareness of erythromelalgia and, without funds, greater awareness will not be raised.

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 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.

These guys could not sponsor their campaigns and projects without fundraisers so this is very important to them and especially to me. I am so grateful to the EM Warriors and this is a way for me to give back.

Thank you EM Warriors ! ♥

Franka