Welcome To EM Warriors

Welcome! 

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Getting involved

  • Click on 'my page' to register for free membership and full access to the website
  • Invite contacts and make friends
  • Download the EM warrior toolkit
  • Post in our discussion forum 
  • Read or write a blog
  • Join or create a group
  • Use our extensive resources and research archives
  • Share your EM pics and videos
  • Get on our soap box - let off steam!
  • Plus much more

Getting informed

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  • Check our privacy policy
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Getting site support 

Erythromelalgia Facts

 

New Erythromelalgia Topical 2020

 

 
 
 
 
 
CLINICAL TRIAL : PHASE 1 TO START LATE 2020
 
The FDA has granted Orphan Drug designation to ATX01 for the treatment of erythromelalgia.
 
ATX01 is a topical gel formulation of a proprietary high-concentration amitriptyline that works by targeting damaged nerve fibers in the skin, while avoiding systemic adverse reactions. The designation is supported by preclinical studies of topical amitriptyline that showed antinociceptive activity on voltage-gated sodium-channels Nav1.7, Nav1.8 and Nav1.9 as well as peripheral sensory nerve fibers Aβ, A∂ and C.
 
AlgoTherapeutix is a French biotech start-up, hosted by the Paris Biotech Santé incubator developing ATX01, a treatment for Chemotherapy-Induced Peripheral Neuropathy and Erythromelalgia. https://www.pharmaceutical -business-review.com /news/algotherapeutix-announces-orphan-drug-designation-granted-by-fda-for-atx01-in-erythromelalgia/
 
The opportunity to investigate ATX01 in erythromelalgia is an exciting medical pursuit as patients have few options to relieve considerable pain
 
EM Warriors will bring you further news as soon as it is released

Living with erythromelalgia

What Is Erythromelalgia?

 

 

 

 

 

 

 

Read more

I Am The Face Of Erythromelalgia Campaign 2020

 

 
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Discussion Forum

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: 

 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. 

Today's News Highlights

paul Ruliffson and Clare Kerr joined Erythromelalgia Warriors: Patient Support & Information Network
Monday
Alanna zalit updated their profile photo
Jan 19
Alanna zalit and Danielle Mahoney joined Erythromelalgia Warriors: Patient Support & Information Network
Jan 19
Alison Stollenmaier is now a member of Erythromelalgia Warriors: Patient Support & Information Network
Welcome Them!
Jan 16
Caroline Greer and Jill Wilson joined Erythromelalgia Warriors: Patient Support & Information Network
Jan 8
Lindsay updated their profile
Jan 6
Lindsay and Susan (Sue) Williamson joined Erythromelalgia Warriors: Patient Support & Information Network
Jan 6
Yvonne hunter updated their profile photo
Jan 6
More…

Pinterest

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.®

 

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!

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!

   

 June 2020

  • French start up pharmaceutical excited about ATX01 for erythromelalgia. Clinical trials for this topical due late 2020

April 1st 2019

  • Gabapentin and pregabalin will be classed as controlled drugs in the UK  as from April 1st. See your surgery if concerned.

January 2019

  • Genetics and Pain Sensitivity Research Program. The aim of the study is to create a patient registry and learn more about the cause, progression and underlying genetic basis of certain rare diseases – with a particular interest in EM patients/families who do not have the Nav 1.7 mutation. Full details Genetics and Pain Sensitivity Research Program

 

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

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.

Inspirational Faces of Erythromelalgia (Group 7)

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Voices Of Strength

Sharing inspirational stories about living with invisible illness.

The Hotdesk

Bringing you the latest updates in chronic pain research.

Winter 2015/6

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