WELCOME TO THE EM WARRIORS

 

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Getting site support 

 

Erythromelalgia Facts

 

What Is Erythromelalgia?

 

 

 

 

 

 

 

Read more

Living with erythromelalgia

I Am The Face Of Erythromelalgia Campaign 2021/2

 

 

Pain Research UK

 

PAIN RESEARCH STUDY - UK MEMBERS ONLY
 
Do you wish you could predict your pain severity in the near future?
 
Researchers at the University of Manchester are building a 'pain forecast' and are interested in hearing your thoughts about this.
 
They are conducting a UK-wide questionnaire, and you are invited to fill it out here: tinyurl.com/PainForecast.
 
 
If you would like any more information, please feel free to contact claire.little@postgrad.manchester.ac.uk or ask the admin team
 
Thank you!

 

 

UNDER CONSTRUCTION

We are currently upgrading our old website so please be patient with us.

 

New Erythromelalgia Topical 2020/21

 

 
 
 
 
 
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

Today's News Highlights

Jeni Murphy and Karen joined Erythromelalgia Warriors: Patient Support & Information Network
Monday
Farzana Khan is now a member of Erythromelalgia Warriors: Patient Support & Information Network
Welcome Them!
Jun 13
Lorraine Williams is now a member of Erythromelalgia Warriors: Patient Support & Information Network
Welcome Them!
Jun 10
Lou de is now a member of Erythromelalgia Warriors: Patient Support & Information Network
Welcome Them!
Jun 9
Keith Pounder and Marge Haders joined Erythromelalgia Warriors: Patient Support & Information Network
Jun 5
Laura C Billado and Isabelle bruneau joined Erythromelalgia Warriors: Patient Support & Information Network
May 24
Shelly Mckinney is now a member of Erythromelalgia Warriors: Patient Support & Information Network
Welcome Them!
May 17
beth j and Linda K Bracken joined Erythromelalgia Warriors: Patient Support & Information Network
May 15
More…

PLEASE SUPPORT OUR FUNDRAISER 2022

 

The Heart of FACES is You and We Need Your Help. | FACESVA | Family Advocacy Creating Education and Services ERYTHROMELALGIA WARRIORS FUNDRAISER 2022

All donations over $25 receive a free awareness bracelet or charity ribbon pin

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!

 

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 

Spotlight On

Spotlight on co-existing conditions in erythromelalgia.

Raynauds syndrome 

The Hotdesk

Bringing you the latest updates in chronic pain research.

BEING UPDATED

Inspirational Faces of Erythromelalgia

Breaking News!

   

May 2022

 June 2020/21

  • 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

  • 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

Make A Donation

For just the cost of a cup of coffee you could be making a big difference to our research fund!

 

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. 

 

 

 

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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.