In the News

In the News

TEA Board Member Participates in Podcast

January 15, 2024

TEA Board Member, Jackie Gonzalez participated in a science podcast called 'Probing Pain' created by Nice Genes!
Nice Genes! produces podcasts that range from healthcare and biotechnology to forests and fisheries, the evolving study of genomics is leading to some of the most exciting and world-changing discoveries in science and medicine.

In the News

Article in Time Magazine’s Ideas/Health Section

February 25, 2023

Woman living with erythromelalgia article about living with EM is published in Time Magazine’s February 24, 2023 online publication (section in Ideas/Health section).

The article details what it is like to live with EM:  ‘I Feel Like I’m Burning Alive. It's Hard for People to Believe Me’

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USA Today – TEA member interviewed – limited time link – read now:

December 12, 2022

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People with Rare Disorders Handle COVID-19 Outbreak

April 18, 2020

Advantages that people with rare disorders have when dealing with the current pandemic.

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EM In National Geographic Article

January 11, 2020

TEA member and Yale researcher interviewed for National Geographic article.

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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.

In the News

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.

In the News

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.

In the News

Revolutionizing Breakthrough for those suffering from chronic pain: a clinical research with medical cannabis sublingual tablets is currently on its way

April 23, 2019 - PRNewswire

Israeli drug company Panaxia announces clinical trial for sublingual cannabis tablets for treatment of chronic pain.

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Canada Forms Chronic Pain Task Force

April 4, 2019 - Ross, Marvin - Pain News Network

Canada establishes national task force to examine how to prevent and manage chronic pain and remove barriers to pain treatment.

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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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Women’s Pain Is Different From Men’s—the Drugs Could Be Too

March 19, 2019 - Marill, Michele Cohen - Wired

New study demonstrates differences in how men and women experience pain, a finding that may someday lead to sex-specific pain medications.

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Invisibilia: For Some Teens With Debilitating Pain, The Treatment Is More Pain

March 9, 2019 - Spiegel, Alix - NPR

Story of a 14-year-old girl whose chronic pain was treated in a rehabilitation program designed to desensitize patients by pushing them through intense levels of pain and training their brains to ignore the hurt.

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New target for chronic pain relief confirmed by scientists

March 7, 2019 - Medical Xpress

Japanese researchers observe that activating a type of cell receptor called REV-ERBs regulates pain-causing and inflammatory molecules in the body, a finding that could lead to new drug treatments for chronic pain.

In the News

The Media Reporting About Chronic Pain and Opioids is Changing

February 10, 2019 - Coghlan, Ed - National Pain Report

Media reporting of the opioid debate broadens to cover perspective of the chronic pain patient.

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Scientists develop first fabric to automatically cool or insulate depending on conditions

February 7, 2019 - Science Daily

Researchers have created a fabric that dynamically regulates heat passing through it.

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A New Prognosis for Pain Care

February 6, 2019 - Landro, Laura - The Wall Street Journal

Advances in pain care include brain scans that measure pain levels, pain assessment questionnaires, genetic testing, neuromodulation implants, neurostimulation, and a return to holistic therapies.

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Stanford Neuroscientists May Revolutionize Pain Management

February 1, 2019 - Rosso, Cami - Psychology Today

Scientists identify brain cells responsible for the emotional “unpleasantness” of pain, providing a potential target for future drug treatments that, while not dulling the actual pain signals, would alleviate the emotional distress of pain.

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Isabel Hospice to launch new Waltham Cross Living Well service to support people with life limiting conditions

January 30, 2019 - Page, Charlotte - Hertfordshire Mercury

British woman with EM benefits from hospice’s new wellness center.

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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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Gene therapy blocks peripheral nerve damage in mice

January 16, 2019 - Strait, Julia Evangelou - WUSTL School of Medicine

Scientists develop gene therapy that prevents axon destruction in mice and could lead to a therapeutic strategy to help prevent loss of peripheral nerves in human neurodegenerative conditions.

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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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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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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.

In the News

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.

In the News

Armed cops march seriously ill doc off easyJet flight at gunpoint after he ‘attacked cabin crew’ in row over extra leg room

August 15, 2018 - Syson, Neil - The Sun

Retired physician with EM ordered to leave flight over leg room dispute.

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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.

In the News

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 Neuroscience of Pain

June 25, 2018 - Twilley, Nicola - The New Yorker

Research at Oxford University uses fMRI to pinpoint areas of the brain responsible for pain perception.

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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.

In the News

The long search for the pain gene

April 18, 2018 - Wager, Tor - Nature

Review of book by Stephen G. Waxman, MD, Chasing Men on Fire: The Story of the Search for a Pain Gene.

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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

Profiles 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.

In the News

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.

In the News

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.

In the News

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.

In the News

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.

In the News

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.

In the News

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.

In the News

No Longer Stopped in His Tracks

June 9, 2015 - Johns Hopkins Medicine

Virginia man shares his story of getting an EM diagnosis.

In the News

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.

In the News

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.

In the News

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.  

In the News

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.

In the News

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.

In the News

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.

In the News

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. 

In the News

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.  

In the News

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.

In the News

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.