Health
3 Tips for Living with Erythromelalgia

Erythromelalgia is an extremely rare condition that’s recognized as such by the National Organization for Rare Disorders (NORD). It affects an estimated 1.3 out of 100,000 people in the United States. But as rare as it is, it can be debilitating for the individuals who have it.
If you or a loved one has erythromelalgia, finding answers is obviously your greatest priority.
What is Erythromelalgia?
Erythromelalgia is extremely uncommon. However, for those who suffer from the condition, it’s a painful condition that commonly affects the feet and (sometimes) the hands. People with the condition describe it as an intense, burning pain that can be both episodic or continuous. Some people experience sudden flare ups, while others have a more chronic form of the condition.
“In most individuals, it is episodic/intermittent, with episodes of red hot feet and/or hands intermittently,” NORD explains. “Symptom onset may be gradual (insidious), with the condition potentially remaining relatively mild for years. However, in others, it may have a sudden (acute) onset, possibly spreading and becoming severe over weeks.”
For those interested in the etymology of the word, the prefix erythro means “redness.” Mel means “limb.” The suffix algia is typically used to indicate “pain.” So the term, while difficult for most to pronounce correctly on the first attempt, quite literally means painful red limbs.
Other names and related conditions for erythromelalgia include erythermalgia, Mitchell disease, Weir-Mitchell disease, and Gerhardt disease.
Doctors generally discuss erythromelalgia in two classifications: primary and secondary. Both tend to have similar symptoms, including burning pain, itchiness, redness, warmth to the touch, sores on the feet, and even radiating/shooting pain.
Primary erythromelalgia has no known cause. It’s most commonly seen in children, but can technically impact anyone. Painful symptoms and discomfort usually affect both sides of the body and get worse in warmer weather. Primary erythromelalgia attacks begin with itchiness that then progresses into severe burning pain. These attacks may last anywhere from several minutes to days.
Secondary erythromelalgia is diagnosed in people who have other conditions and diseases, like autoimmune diseases. This type of erythromelalgia is more commonly seen in adults and usually begins in middle age. The symptoms are pretty much identical to those of primary erythromelalgia.
Tips for Living With Erythromelalgia
Since most doctors know very little about erythromelalgia, there are no known cures. Most people just have to learn to live with it. Having said that, there are certain things you can do to treat the symptoms and make flare ups less likely.
- See the Right Specialist
As frustrating as it is, most doctors simply don’t know much about erythromelalgia. And if you think about it, who can blame them? With just 1.3 out of 100,000 people suffering from this condition, they could go years without seeing an erythromelalgia patient in their office. Thankfully, there are specialists who are very familiar with this condition.
When choosing a specialist, look for someone who knows this disorder in and out. Untamed Iona, for example, has a specialist who actually has the condition herself! You can even book an online call with her (so it doesn’t matter where you’re located).
- Try Medication
Again, there’s no perfect medication that works for everyone with erythromelalgia. There are, however, effective options that can work. You must be open to trial and error.
Oral medications include options like magnesium selective serotonin, calcium antagonists, tricyclic antidepressants, reuptake inhibitors, and others. Topical medications include compounded creams (gel of 1 percent amitriptyline and 0.5 percent ketamine), capsaicin cream (Zostrix), and lidocaine and menthol (Lidoderm).
- Consider Surgery
While it’s definitely a last resort option, there are surgical treatments that can provide relief. The procedure, known as a sympathectomy, cuts nerve endings that send pain signals to the hands and feet. This procedure does come with the potential for serious side effects, including infection, bleeding, and permanent nerve damage. Thus it’s never an ideal choice.
Live Your Best Life
While there might not be a cure for erythromelalgia, there’s still plenty of hope. Just because you haven’t found relief yet doesn’t mean you never will. It’s a matter of speaking with the right people and trying a number of options until something works for you. Whether it’s eliminating a certain factor that seems to cause flare ups, using a specific medication, or even exploring surgery as an option, there are plenty of treatment methods. Don’t give up on yourself. You are your greatest advocate!
Health
The Scientist as Storyteller: How Steven Quay Makes Complex Medicine Relatable

Scientific discovery often struggles to reach the people it is meant to serve. The distance between research and public understanding can be vast. For most scientists, publishing in peer-reviewed journals is the endpoint. For Dr. Steven Quay, it is only the beginning. His career has been defined not just by what he has discovered, but by how he communicates it.
Scientific trust today faces growing skepticism and misinformation spreads faster than facts, Quay has embraced a rare role. He is both a scientist and a storyteller. His ability to bridge the technical and the human is what makes his voice resonate across disciplines, institutions, and communities.
Writing as a Lens into the Human Side of Science
One of the clearest examples of Quay’s narrative instinct lies in his writing. He has authored three major books, each rooted in a different part of his life and expertise. Together, they show how a medical researcher can also be an accessible public thinker.
In Stay Safe: A Physician’s Guide to Survive Coronavirus, published June 5, 2020, during the first days of the pandemic, Quay offered plainspoken, evidence-based guidance on protecting oneself and one’s family. It was not framed as a political statement or a policy directive. It was personal and grounded in the daily realities people faced. He wrote it not just as a scientist, but as someone who wanted to help others navigate a frightening time with clarity and calm.
His second book, The Origin of the Virus, tackled a more complex and controversial subject: the question of how SARS-CoV-2 emerged. Rather than speculate, Quay walked readers through the scientific evidence with the kind of transparency that is often lacking in public discourse. The tone was methodical, never alarmist. What set the book apart was its balance, engaging to a lay reader, yet rigorous enough to be taken seriously by professionals.
Then there is A Ride Through Northville, a deeply personal departure from the world of virology and oncology. Here, Quay revisits his childhood in Michigan, capturing the streets, friendships, and quiet moments that shaped him long before he entered a lab. The structure of the book mimics the experience of riding a bike through town, evoking memory not as a chronology, but as a sensory journey. For a scientist whose career has involved high-stakes research and global debates, this book offers a rare window into the reflective, grounded person behind the work.
Speaking Clearly Without Speaking Down
Quay’s communication skill is not limited to the written word. He has also become a frequent guest on health-focused podcasts and a speaker at public science forums. His TEDx talk on breast cancer prevention is one of the most viewed videos on the subject, and for good reason. He does not rely on drama or abstract theory. Instead, he explains mammographic density, hormonal risk, and clinical trial design in a way that makes the science both comprehensible and actionable.
In interviews, Quay has a habit of slowing things down. He avoids jargon unless he defines it. He is comfortable saying, “We don’t know yet,” which, in the realm of public science, is a kind of honesty that builds trust. He often discusses Atossa Therapeutics’ trials in plain terms, describing how experimental drugs like (Z)-endoxifen might help certain patients respond better to treatment. He emphasizes that these are ongoing studies, not marketing pitches, which sets him apart from many biotech executives.
Educating the Public Without Oversimplifying
One of the challenges of public-facing science is resisting the urge to oversimplify. Many well-intentioned scientists flatten complexity to fit the constraints of social media or mainstream news. Quay does not follow that path. He explains mechanisms and hypotheses with nuance, trusting that readers and listeners are capable of understanding more than they are often given credit for.
His social media presence reflects the same philosophy. He shares articles and research updates, but rarely with alarm or bravado. When he comments on current medical debates, he tends to lead with evidence rather than opinion. That steady tone has earned him a following that spans across ideological and professional divides.
During the pandemic, this approach stood out. While others chased headlines, Quay focused on distilling evolving guidance into practical advice. He acknowledged the limits of current knowledge, updated his views as new data emerged, and emphasized science as an iterative process. His voice became one that many people turned to not for certainty, but for clarity.
A Scientist’s Responsibility Beyond the Lab
Quay has often said that science does not exist in isolation. It is part of society. That belief informs why he writes, speaks, and engages in public discourse as actively as he does. He sees the scientist’s role not just as a producer of knowledge, but as a custodian of its meaning.
He has testified before the U.S. Congress and advised the State Department, not as a politician but as a physician-scientist committed to accuracy. In each case, his contribution has been grounded in data but shaped by a recognition of the human implications of policy and research.
This is especially evident in his work on breast cancer. By advocating for better screening tools and more personalized treatments, Quay speaks not only to clinicians and investors but to women facing real fears about their health. He explains the science behind mammographic density and hormonal modulation not just with charts, but with stories about what those risks mean in someone’s life.
Storytelling as a Form of Service
What makes Quay’s communication style compelling is that it never feels performative. He is not branding himself or building a media empire. He is doing what he believes scientists should do: make their work useful.
In every form of his storytelling, from the deeply personal to the technically specific, there is a throughline of responsibility. He understands that science touches people’s lives in ways that go far beyond the lab. For him, that means speaking clearly, writing honestly, and never underestimating the audience.
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