Erythromelalgia Warriors: Patient Support & Information Network

Welcome To EM Warriors

Welcome!

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Getting involved

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Invite contacts and make friends
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Post in our discussion forum
Read or write a blog
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Use our extensive resources and research archives
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Get on our soap box - let off steam!
Plus much more

Getting informed

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Erythromelalgia Facts

Red Hand Challenge 2018: Give your hand to support research into erythromelalgia

Fundraising with GoGetFunding

EM Warriors Proud To Partner with Patient Worthy

The Eythromelalgia Warriors are proud to be partnering this awesome online publication

Patient Worthy^® is an online publication that provides relevant information to rare disease patients, caregivers and advocates alike.

Through education, awareness and a touch of humor, our goal is to inspire those in the rare disease community to tackle their chronic conditions, armed with the knowledge that they are not alone in their fight. We root for new treatment options, support spreading awareness and encourage the occasionally tough conversation.

Here at Patient Worthy, if we are not learning to live with a chronic illness or rare disease ourselves, we are loving or working with someone who is. It is through this perspective, research and our passion for rare disease awareness that we bring you Rare Patient News. Well Done.^®

I Am The Face Of Erythromelalgia Campaign 2018

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The Flaring Firelady by EM Warriors

Photo mosaic by: emwarriors @ Mosaically

The Faces Firefeet Mosaic by EM Warriors

Photo mosaic by: emwarriors @ Mosaically

Get Involved in Spotlight on Erythromelalgia: An Awareness Project 2018

Are you frustrated, fed up and flaring over the struggle to get your voice heard ( and believed)?

Do you wish you could do something to raise awareness and greater understanding of erythromelalgia?

Well, continue reading this post because Spotlight on Erythromelalgia:An Awareness Project 2017/8 needs contributors like you!

GET INVOLVED:

We need as many of you as possible to send us a short video clip (approx 5 minutes) where you talk about the following:

1. How your EM started.
2. Describe your EM symptoms.
3. How EM affects your life.
4. Finish the following metaphor: 'My erythromelalgia is like...'

NB: If you find filming yourself too uncomfortable then please send us a voice clip instead.

RECORDING TIPS:

- Please be succinct.
- Please try to be as descriptive as possible.
- Please film/record using a white background so our editing looks seamless.

This is a superexciting project that intends to create one unique documentary-style awareness video of what it is like to have EM, wherever you are in the world.

CLOSING DATE:

We will be accepting video clips until December 31st 2017

(Please contact us if you need more time - we understand that most of us find it impossible to plan/schedule things)

SEND YOUR RECORDINGS TO US:

- Please attach your video and/or voice clips to an email and send it to erythromelalgiawarriorsnetwork@gmail.com.

-Larger files or MP3's routinely upload to Google drive so send us the email with the link and we will download that way.

-Use https://wetransfer.com/ ( It is free and easy programme)

If you need any help with recording, attaching your clips to email or sending them ,please contact us.

We truly could not continue to raise awareness or create a greater understanding of erythromelalgia without your participation or your support, so we hope that as many of you as possible get involved in this thrilling collaboration.

Thanks you!

RAISING AWARENESS Of ERYTHROMELALGIA, ONE STEP AT A TIME!

EM Warriors Partner With The Mighty

EM Warriors Are Partnering With The Mighty!

We're thrilled to announce a new partnership that will bring our resources in front of The Mighty's wide-reaching readership. We will now have a growing home page on The Mighty and appear on many stories on the site.

The Mighty is a story-based health community focused on improving the lives of people facing disease, disorder, mental illness and disability. More than half of Americans are facing serious health conditions or medical issues. They want more than information. They want to be inspired. The Mighty publishes real stories about real people facing real challenges.

We're dedicated to helping people with erythromelalgia in their lives. With this partnership, we'll be able to help even more people.

We encourage you to submit a story to The Mighty and make the voice of an erythromelalgia sufferer heard.

"Here's an example of the kind of stories on The Mighty: To the Person Who Thinks My Fibromyalgia Isn't Real"

Other story options:

The Difficulty of Rating Pain on a Scale of 1 to 10 When You Deal With Pain Often

12 People Describe What It's Like to Live With Chronic Pain

I Won't Apologize for Having Fun While Chronically Ill

Do you want to tell your story but don't know where to begin? Contact us at erythromelalgiawarriorsnetwork@gmail.com and we will help you get your story down and published.

What Is Erythromelalgia?

Struggling with EM

Started by Jenny in Medications and treatments, Symptoms, and Dr Database

Admin

Your flare photos and describe how that flare feels

Started by mads in Symptoms

Botox experience

Started by Merle Easton in Medications and treatments

Awareness Ribbon?

Started by Angela in Other

Admin

Diagnostic tips for erythromelalgia

Started by mads in Cool tips and Resources

Palmitoylethandamide (PEA)

Started by michael leaver in Medications and treatments

Pregnancy and EM

Started by Lauren Jones Sparks in Other

My 3 yr old

Started by Alyson Keane in Little EM warriors (children)

Admin

DESIGN A TATTOO EVENT

Started by mads in Resources

Managing extreme swelling and pain in feet

Started by Paul Burik in Medications and treatments

Today's News Highlights

Romaine sproule is now a member of Erythromelalgia Warriors: Patient Support & Information Network

Welcome Them!

Celia Adams updated their profile photo

More…

Living with erythromelalgia

EMpower, Uplift and Inspire Campaign 2016/7

Get involved in our latest erythromelalgia campaign . Click link for more details

The Warriors Chant

You are fierce You are a survivor You are a fighter through and through You are brave You are courageous There is an EM warrior within YOU!

Breaking News!

July 2015

Xenon announces follow up to the primary genetic study, which will focus on facial EM. Xenon are currently inviting certain participants from the 2013 genetic study to take part in a survey on facial EM. Participants are being asked to fill in an online questionnaire and provide a saliva sample (if requested). This is fantastic move forward for the EM community! :)

August 2015

FDA OK a new drug 'Finacea' for Papulopustular Rosacea.

October 2015

Xenon are still performing free worldwide genetic testing with saliva kit.

November 2015

'Tonmya', a drug developed for the treatment of fibromyalgia, could be available end of 2016. For more information http://www.affirmstudy.com/

January 2016

EM transdermal 'Midodrine' developed by Mayo clinic available through compounding pharmacists.

February 2016

IMC-1 promising fibromyalgia drug fast tracked by FDA.

March 2016

New findings potentially provide several new drug targets - CSF1, CSF1 receptor, and DAP12 - that have huge therapeutic potential for neuropathic pain.
Drug candidate ZYN001 that delivers marijuana via skin patch soon to be developed for fibromyalgia.
Beiersdorf study shows licorice extract can help rosacea.
CDC release new guidelines for opioid prescribing for chronic pain.

April 2016

Carbamazepine reduces pain in S241T inherited erythromelalgia mutation. Researchers demonstrate very clearly that it is possible to use genomics and molecular modeling to guide pain treatment. We have the research paper 'Inherited erythromelalgia due to mutations in SCN9A: natural history, clinical phenotype and somatosensory profile' in resources.

Privacy On Our Community

This is a members only 'closed' community, but please be aware that in order to raise much needed erythromelalgia awareness certain site content is searchable via the internet. If you are concerned about being Googled or Yahoo-ed then you can protect your anonymity by creating a unique username.

See our Privacy policy for more information.

Note: On EM Warriors the privacy settings are set per page, so any page set to private will not be crawled by search engines.

Guidelines For Our Community

Please read our Terms of service

Crisis Hotlines

USA 1-800 7842433/1-8002738255
UK Samaritans 0845 790 90 90
Ireland Samaritans 01850 60 9090
Australia 1300 - 651251
Canada 1-866 996 0091/613-722 6914
Other international numbers please visit www.suicide.org/international-suicide-hotlines.html

Disclaimer

The content of the EM Warriors website, including text, graphics, images, information obtained from licensors, and other material, is intended for informational and educational purposes only. It is not a substitute for professional medical advice, diagnosis, or treatment.

Please never disregard the advice of your physician or delay seeking it because of something you have read on this website.