Kristan’s Birthday Fundraiser For EM Warriors

Hello, my name is Kristan and I am an erythromelalgia sufferer .

This year I am asking all my family, friends and fellow EM sufferers to please support my birthday fundraiser to help me raise money for The Erythromelalgia Warriors Organisation .

I am blessed with an amazingly supportive and loving family but living with EM is still overwhelming . I am incredibly grateful to EM Warriors for all the support, information and resources I have received over the years and treasure the friendships I have made with fellow EM sufferers ❤ .

All monies raised will go towards funding their highly successful and desperately needed free global awareness program ,which educates medical and health professionals as well as erythromelalgia patients worldwide. It will also help towards financing their awesome schools awareness project that teachers, social workers and peer groups in schools, colleges and universities. Your donations will also help cover the costs of support services, awareness materials and the production and distribution of online/offline educational resources and pop a few dollars into their research kitty enabling them to sponsor independent grassroots projects and more.

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 tissue , mucous membranes, mouth, throat, eyes , genitals and 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 . 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 all ages, gender and ethnicity too.

Erythromelalgia is such a poorly understood and misunderstood 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.

As you can imagine the lack of education and awareness is a huge problem!

It is only through your donations and support for birthday fundraisers like mine that The Erythromelalgia Warriors can continue and build upon their awesome work to make a difference!

Foot flares : My feet often swell and the skin feels so tight I fear they will explode. The excruciating burning is crippling and greatly impacts my mobility.

The protruding throbbing veins are unsightly and the soft tissue feels bruised and aches. Nights are the worse and getting any sleep a struggle.

My foot flares are hell and petechaie is developing (tiny blood vessels burst and blood leaks into the skin)

Another excruciating flare about to start!

I also have blue or trash toe caused by insufficient blood flow.My toes turn a purple- black colour due to the lack of oxygen; this is called peripheral cyanosis

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.

THEIR MISSION:

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.

THEIR VISION:

A world where there is greater understanding of EM and where the hope of a cure becomes reality.

BIRTHDAY FUNDRAISER

I would love to thank everyone at The Erythromelalgia Warriors by giving back and what better way to convey my heartfelt thanks than this birthday fundraiser (June 27th).

Not only am I immensely grateful for their continued support and information but their friendship .

God bless you!

Kristan 😘