In the News

News about Erythromelalgia and related stories.

In the News

Corpus Christi teen battles rare illness to claim national debate championship

July 5, 2019 - Ramirez, David Silva - Corpus Christi Caller Times

Family of Texas teenager shares story of his struggle with EM and other illnesses.

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CBD cream helps cancer patients heal burns

May 23, 2019 - Arthur, Jean - The Spokesman-Review

Woman with EM among those finding relief with new CBD cream.

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Red lights at Milford fire stations draw attention to rare disease

May 14, 2019 - Bosma, Alison - Milford Daily News

Family of Massachusetts boy with EM spreads awareness by bringing local fire department on board with state’s “light up red” campaign.

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Local woman looks to fire departments to help raise awareness for rare disease

May 12, 2019 - Morelli, Jim - Boston 25 News

Massachusetts resident leads campaign for local fire departments to light up red during the month of May to raise awareness for EM.

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At 71, She’s Never Felt Pain or Anxiety. Now Scientists Know Why.

March 28, 2019 - Murphy, Heather - The New York Times

Scientists discover new gene mutation in a woman with inherited pain insensitivity.

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CBD Cream Benefits Those with Chronic Pain: Here’s How

January 21, 2019 - UK UnKut

Topical CBD cream for treating chronic pain.

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World’s First Lab-Grown Human Blood Vessels Are a “Game Changer” for Millions of People

January 17, 2019 - Hale, Tom - IFL Science!

Researchers say blood vessels grown from stem cells can now be used to study the effects of vascular diseases directly on human tissue.

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When the Illness Is a Mystery, Patients Turn to These Detectives

January 7, 2019 - Kolata, Gina - The New York Times

Undiagnosed Diseases Network searches for cause of California woman’s EM symptoms.

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Seeking Better Pain Management, VT Scientists Test New Potential Drug

December 26, 2018 - Harris, Robbie - WVTF/Virginia Public Radio

Scientists at Virginia Tech test potential new pain-killing drug.

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Young people suffering chronic pain battle isolation and stigma as they struggle to forge their identities

December 14, 2018 - Jordan, Abbie - Medical Xpress

Informal study reveals challenges faced by children and adolescents with chronic pain.

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Scientists Identify Method to Study Resilience to Pain

December 11, 2018 - Bangalore, Lakshmi - Yale School of Medicine

Yale researchers use stem cell technology and gene sequencing to explain difference in pain resilience between family members with the same pain-causing mutation by measuring level of neuronal hyperexcitability.

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Scorpion Venom to Shuttle Drugs into the Brain

November 16, 2018 - Institute for Research in Biomedicine (IRB Barcelona) - R&D Magazine

Research suggests scorpion venom could be used to develop a method for carrying drugs across the blood-brain barrier.

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AMA: ‘Inappropriate Use’ of CDC Guideline Should Stop

November 14, 2018 - Anson, Pat - Pain News Network

American Medical Association takes a stand against the misapplication of CDC’s opioid prescribing guidelines.

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The Stem Cell: Life’s Goblet or Poisoned Chalice?

November 14, 2018 - Labant, MaryAnn - Genetic Engineering & Biotechnology News

Stem cell research may be the key to curing many diseases, including inherited EM.

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FDA Grants Non-Opioid Analgesic VVZ-149 Fast Track Status

November 9, 2018 - Monthly Prescribing Reference

Pharma company Vivozon’s new pain drug gets fast-tracked by FDA.

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Nonopioid Approaches to Pain: The Hunt Is On

October 12, 2018 - Brauser, Deborah - Medscape Neurology

The search for new nonopioid treatments for pain.

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New Cannabis Pain Patch for Fibromyalgia and Nerve Pain

July 13, 2018 - Health Magzine

Transdermal patch containing CBD developed to treat neuropathic pain.

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Chasing the genetic origins of ‘burning man syndrome’

June 25, 2018 - Chriss, Roger - Genetic Literacy Project

Review of book by Stephen G. Waxman, MD, Chasing Men on Fire: The Story of the Search for a Pain Gene, with summary of Yale University’s Nav1.7 research.

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The Search for a Chronic Pain Gene

May 14, 2018 - Chriss, Roger - Pain News Network

Yale University’s Stephen G. Waxman, MD, publishes book Chasing Men on Fire: The Story of the Search for a Pain Gene.

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Woman battling rare condition helps raise awareness

May 7, 2018 - Kashinsky, Lisa - Eagle-Tribune

Massachusetts resident works with state representative to declare May as the state’s Erythromelalgia Awareness Month and organizes EM Awareness Day event in Boston.

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Perth dad Gwynne Erasmus learns to walk again despite suffering rare nervous disorder

March 12, 2018 - The West Australian

Australian man with EM is able to walk again after physical therapy.

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Claudine Phillips, the woman who lives in a car

February 8, 2018 - Job, Dane - Soweto Urban

South African woman tells her story to a local newspaper.

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UAE’s ‘girl on fire’ tells of living with burning genetic condition

January 16, 2018 - Webster, Nick - The National

Family of Dubai girl tells of her struggle with EM.

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The Fire Inside Our Veins

January 12, 2018 - Bogner, Melissa Curley - Huffington Post

Profile of four children living with EM.

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Cole Swanson: Staying cool in the face of adversity

January 1, 2018 - Invisible Project

Family of young boy tells of his struggle with inherited EM.

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Targeting Sodium Channels for Pain Relief

January 1, 2018 - Offord, Catherine - The Scientist

Research on sodium channel Nav1.7’s role in pain perception and the search for a Nav1.7-blocking drug, including recent efforts by several pharma companies.

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Some patients with erythromelalgia respond well to corticosteroids

September 25, 2017 - Kronemyer, Bob - Pain Medicine News

Mayo Clinic study finds corticosteroids most effective when EM is caused by surgery or trauma, when onset is rapid, and when patient is treated promptly.

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MS Burning Feet and Hands Could Be Erythromelalgia

May 31, 2017 - Wilson, Debi - Multiple Sclerosis News Today

Woman with EM secondary to multiple sclerosis shares her story.

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End Pain Forever: How a Single Gene Could Become a Volume Knob for Human Suffering

April 18, 2017 - Hayasaki, Erika - Wired

The role of sodium channel Nav1.7 in pain perception and inherited EM, and the search for a drug that will selectively target it; includes interview with TEA member Pam Costa.

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Snail venom compound ‘offers chronic pain therapy’

February 21, 2017 - BBC News

Research suggests snail venom could be used to develop a treatment for chronic pain.

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We’re terrible at measuring other people’s pain—but researchers think there is a better way to treat it

January 12, 2017 - Walsh, John - Quartz

Discussion of the challenge doctors face in understanding a patient’s level of pain, and several non-drug treatment options, including spinal cord stimulation and transcranial magnetic stimulation.

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Doctors thought it was a simple foot infection. They were so wrong.

August 22, 2016 - Boodman, Sandra G. - The Washington Post

As part of the newspaper’s Medical Mysteries column, a Maryland woman tells of her struggle to get an EM diagnosis.

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Brayden’s Story: Braving a Life of Fire

May 5, 2016 - Bogner, Melissa Curley - Huffington Post

Family of Wisconsin boy tells of his struggle with EM.

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Woman Feels Like She’s ‘Burning Alive’ Because Of Rare Skin Condition Erythromelalgia

December 29, 2015 - Barcroft Media

Michigan woman tells her story of growing up with EM.

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No Longer Stopped in His Tracks

June 9, 2015 - Johns Hopkins Medicine

Virginia man shares his story of getting an EM diagnosis.

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For St. Paul nurse, little brother’s mysterious illness highlighted importance of her profession

May 9, 2015 - Guthrey, Molly - Pioneer Press

Minnesota nurse tells of her younger brother’s struggle with EM.

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Newly identified compounds in spider venom could help treat chronic pain

March 4, 2015 - Whiteman, Honor - Medical News Today

Spider venom contains protein molecules that block Nav1.7 pain pathways and which could lead to new treatments for chronic pain.

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Relmada Therapeutics Selects MepiGel Formulations to Advance Into Clinical Studies

February 4, 2015 - PRNewswire

Relmada announces the start of clinical studies for MepiGel, a topical formulation of the local anesthetic mepivacaine, for the treatment of neuropathic pain.  

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Biogen Idec to Expand Neuropathic Pain Portfolio With the Acquisition of Convergence Pharmaceuticals

January 11, 2015 - Business Wire

Biogen announces plans to acquire Convergence and to develop a drug that will block sodium channel Nav1.7.

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Pain That Won’t Quit

December 1, 2014 - Sutherland, Stephani - Scientific American

Discovery of molecular pathways specific to pain reveals new targets for drug development.

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Collaboration with Dr Stephen Waxman of Yale University to evaluate pharmacology of Nav1.7 mutations in chronic pain disorders

October 6, 2014 - PRNewswire

Convergence Pharmaceuticals announces collaboration with Stephen Waxman, MD, to identify patient groups likely to respond to sodium channel Nav1.7 blockers.

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Girl on Fire – Ann Arbor Pioneer Hockey Player Lauren Chapman perseveres through rare disease

February 16, 2014 - Austin, Kyle - The Ann Arbor News

TEA member Lauren Chapman tells her story to a local newspaper.

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The Quest for Better Pain Relief

July 29, 2013 - Whalen, Jeanne - The Wall Street Journal

Drug companies Pfizer, Xenon, and Convergence are working on developing painkillers that target sodium channel Nav1.7.

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Erythromelalgia – A Life of Fire and Pain

May 11, 2013 - Antoine Crawford, Elisabeth - Your Health Journal

Overview of EM written by TEA member.

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Painting through the Pain

January 21, 2013 - Gallagher, Lori - The Daily Gleaner

TEA member Heidi Grein is featured in a local newspaper for her participation in TEA’s 2012 "Paint Your Pain" art contest. 

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Painting the Pain: Sherwood Artist Shines Spotlight on Rare Disease Erythromelalgia

December 3, 2012 - Antoine, Elisabeth - The Oregon Herald

TEA member Laura Fisher is featured in a local newspaper for her participation in TEA’s 2012 "Paint Your Pain" art contest.  

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New Hope For ‘Man on Fire Syndrome’

November 13, 2012 - Accurso, Anthony - ABC News

TEA member Pam Costa tells her story to news channel.

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Hurt Blocker

June 15, 2012 - Ehrenberg, Rachel - Science News

Current research focuses on sodium channel Nav1.7-blocking drugs, which may relieve pain without side effects.

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Scientists find gene that controls chronic pain

September 8, 2011 - Kelland, Kate - Reuters

British scientists identify gene, HCN2, responsible for regulating chronic pain and believe their discovery should help drug researchers find more effective, targeted painkillers.

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Genetic switch discovered that turns on pain

December 21, 2010 - University of Aberdeen

Scottish scientists discover "switch" that turns on a gene that allows us to feel pain, a finding that could be a step toward the development of new painkilling drugs.

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The Pain Gate: A rare disorder brings insights into the nature of pain

April 1, 2007 - Dobbs, David - Scientific American Mind

Discovery of genetic mutations linked to inherited EM offers insight into the mechanisms of neuropathic pain; includes interview with TEA member Pam Costa.  

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Rare discorder keeps woman off her feet.

January 24, 2006 - Yoo, In-Sung - Wilmington News Journal

TEA president Beth Coimbra tells her story to a local newspaper.

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The one-size dose does not fit all: Physicians and patients should look beyond the guidelines recommended by drug manufacturers

December 6, 1999 - Cohen, Jay S. - Newsweek

The importance of individualizing pharmaceutical dosages.

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