WE ARE CURRENTLY UPGRADING AND RESTRUCTURING OUR WEBSITE SO PLEASE BEAR WITH US.
OPEN BUT UNDER RECONSTRUCTION
March 2023
- UK Research Study On Chronic Fatigue Syndrome/ME (2023) DecodeME is a huge genetic study that aims to uncover causes of ME/CFS, pointing the way towards effective treatments Click to access details
March 2023
- Global Genetic Erythromelalgia Research Study (2023) . Manton Center Gene Discovery Core (BCH) is enrolling EM sufferers of any age and from any country.Click to access details
November 2022
-
Pila Pharma broadens XEN-D0501 with new indication for the treatment of erythromelalgia.The FDA has assigned XEN-D0501 orphan drug designation for treatment of erythromelalgia.XEN-D0501 targets the TRPV1 receptor.Click to access details
October 2022
- AlgoTx has now announced its Phase 2 global clinical trial of ATX01 in chemotherapy-induced peripheral neuropathy in adults.Results expected late 2024. The novel topical ATX01 has orphan status for erythromelalgia.Click to access details
September 2022
- Clinical trials of two novel drugs for the treatment of peripheral neuropathy Topical pirenzepine 4% (WST-057) and NRD135S.E1 (Siberian root) Click to access details
July 2022
- Experimental implant uses coolant to numb nerve pain. Could this help EM sufferers in the future? Click to access details
- New amitriptyline topical ATX01 granted orphan status for erythromelalgia and for other forms of peripheral neuropathy. Phase 2 due to start late 2022.
May 2022
- Emerging treatments for neuropathic pain.Click to access article
June 2020/21
- French start up pharmaceutical excited about new amitriptyline topical 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 (Ended 2017)
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.
ERYTHROMELALGIA FACTS VIDEO
What Is Erythromelalgia?
LIVING WITH ERYTHROMELALGIA
Inspirational Faces of Erythromelalgia
I Am The Face Of Erythromelalgia Campaign 2022/2023
New Erythromelalgia Topical 2022
CLINICAL TRIAL : PHASE 2 TO START LATE 2022
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
PLEASE SUPPORT OUR FUNDRAISER 2022
ERYTHROMELALGIA WARRIORS FUNDRAISER 2022
All donations over $25 receive a free awareness bracelet or charity ribbon pin
February 2023
- TIME Magazine publishes an article about living with erythromelalgia by Je Banach
December 2022
- USA TODAY has just published an article on the future of pain relief . The article focuses on genetic erythromelalgia (IEM) and congenital insensitivity to pain (CIP) whilst exploring chronic pain, the challenges of treatment and the scientific advances offering hope for the future.
IS THERE AN END TO CHRONIC PAIN?
November 2022
- Several studies report that researchers have found that green light helps different forms of chronic pain. Could wearing green eye -glasses be a future method of pain relief?
THE EM WARRIORS CHANT
You are fierce
You are a survivor.
You are a fighter through and through.
You are brave, you are courageous
There's an erythromelalgia 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.
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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.
WELCOME TO THE ERYTHROMELALGIA WARRIORS
Welcome!
Please click the 'my page' tab and complete the profile survey to register for membership.
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- Click on 'my page' to register for free membership and access to the website
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- Plus much more
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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
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
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!
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.
