I am an erythromelalgia sufferer and a proud member of The Erythromelalgia Warriors and this year I am asking all my family and friends to support my birthday fundraiser to help raise money for them to continue their awesome work raising awareness and providing invaluable free support and educational resources.
I am one of an estimated 3 in 100.000 that 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, extreme hypersensitivity, pricking, itching, increased skin temperature and severe neuropathy. Many sufferers have autonomic neuropathy , small fiber 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 our mobility, leaving many sufferers 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, and causes chronic fatigue.
The lack of education and awareness of erythromelalgia is a huge problem!
It is only through birthday fundraisers like mine and donations that The Erythromelalgia Warriors can continue to make a difference!
My foot flares are hell
Hand flares impact my dexterity
It just becomes overwhelming
Crippling chronic fatigue
Another excruciating flare!
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, they 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 educate and raise awareness through their global awareness program and their schools and education campaign.
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.
I tell everyone how grateful I am for all the personal and general support as well as educational resources I have received. I have also made some amazing friendships.
I would love to really say thank you to The Erythromelalgia Warriors by giving back
Well, my birthday fundraiser in April is a fantastic way to say a massive thank you!