Millions Have Rosacea, So Why Is It Still So Mysterious?

Millions Have Rosacea, So Why Is It Still So Mysterious?

A rosy, flushed face can be a sign of embarrassment, allergies, or even drinking alcohol for people especially sensitive to it. But for many people, it may be an indication of rosacea. Scientists have made important breakthroughs in studying and treating rosacea in recent years, but there remain many questions surrounding it, and millions of Americans aren’t getting the help they need to better manage it.

A disorder with many faces

Rosacea is a chronic inflammatory condition that’s thought to affect around 5% of adults (in the U.S., that would roughly translate to 12 million people). It tends to show up later in life, typically after age 30. Its symptoms vary significantly between any two sufferers and can be confused for other skin-related health problems like acne or sunburn.

Many will experience flushed patches of skin around their nose and forehead at first, for instance. But over time, these patches can become permanently reddened. Some people might develop pimple-like bumps or small but visibly swollen blood vessels; some can also feel itching or painful stinging. More severe cases can cause a person’s skin or nose to become thickened and bulbous. All of this is typically relegated to the face, but can extend into the neck and chest, while some people will also or only get watery, itchy and reddened eyes. Episodes of rosacea can come and go for no apparent reason or can be set off by specific triggers, such as exercise, sun, stress, or certain foods.

Another maddening aspect of rosacea is its etiology—meaning that no one’s really sure why it happens. Its inflammatory nature points to some kind of dysfunction with the immune system, however, the exact culprits for this dysfunction are still a mystery.

It’s known to run in families, for instance, indicating that our genetics play a role. But environmental factors like UV exposure or a history of smoking seem to raise a person’s risk, too (some studies have actually found that smoking might lower the odds of rosacea, adding more confusion). Some people seem to develop it as a reaction to certain medications, such as steroids. There’s also been a longstanding link seen between Demodex skin mites—microscopic arachnids that usually live harmlessly on our skin and hair follicles—and rosacea.

Unraveling rosacea

Given the laundry list of potential symptoms and causes, doctors have long tried to find a reliable way to study and classify rosacea. In 2002, the National Rosacea Society released the first proposed standardized criteria for rosacea diagnosis. This criteria divided cases into one of four broad subtypes, marked by certain symptoms (people with papulopustular rosacea, for instance, tended to have pimples).

While this system was a step-up from before, it had its flaws, according to Hilary Baldwin, an associate professor of dermatology at Rutgers Robert Wood Johnson Medical School and rosacea expert. The biggest one being that people diagnosed with one form of rosacea would often have symptoms that overlapped with other forms, particularly flushing. Other times, people’s symptoms might initially fit the description for one form, but then later develop symptoms that matched another.

“Not everybody fits into those nice little categories. Lots of people have a combination of problems. So we changed it again,” she told Gizmodo over the phone.

An example of rosacea.

In 2017, the National Rosacea Society and others released a new criteria that more directly focused on people’s phenotypes, or their actual physical symptoms. The two primary phenotypes, for example, include having chronically reddened skin or the appearance of thickened bumpy skin, while secondary phenotypes could include itching or the emergence of pimples. This newer system, Baldwin says, allows for more preciseness in diagnosing, treating, and studying patients.

“Now instead of trying to squeeze people into those little pegs, we describe each and every aspect of them individually […] and then we encourage therapy based on the things we find,” she said. “The reason why that’s important is because every medication or procedure that we have might work on pimples or redness, but not both. So everyone with rosacea requires a combination of treatments. In the past, people would have gotten just one treatment, which is just not good enough.”

A rosier future

The last few decades have also seen important advances in treating rosacea, especially as of late. In 2006, the Food and Drug Administration approved the first oral drug for the bumps and pustules caused by it, a low-dose version of the antibiotic doxycycline. Other approved treatments like brimonidine (approved in 2013), ivermectin (2014), oxymetazoline hydrochloride (2017), and minocycline (2020) have come down the pipeline as well. Many of these drugs are antimicrobials, though their anti-inflammatory properties might be more relevant for treating rosacea.

We’re also now finally on the verge of finding drugs that can work for several symptoms at once. A modified version of minocycline, currently codenamed DFD-29, is being developed by the company Journey Medical, one that seems to treat both the redness and lesions of rosacea. DFD-29 has passed both of its Phase III trials with flying colors, according to the company, and it’s on track to be approved later this fall.

These treatments and others have made rosacea considerably more manageable than before. People can also reduce episodes of rosacea by identifying and avoiding their triggers. A 2018 survey by the National Rosacea Society found that almost three-quarters of sufferers made dietary changes to manage their flare-ups, for instance, with spicy foods and alcohol being common things to steer clear of.

But we’re likely still a long way off, if ever, from finding a cure to it, according to Baldwin. And there are many enduring mysteries about it left to be solved. One persistently perplexing question is whether Demodex mites actually help spark rosacea or if they’re simply a sign of its emergence.

“We know that in most patients with inflammatory rosacea, the Demodex count is much higher than in folks without rosacea. But is the Demodex causing the rosacea, or is the milieu that rosacea creates within our hair follicles just super comfy for Demodex?,” she said.

We do appear to be getting closer toward unraveling some of the mechanisms behind rosacea, at least. Recent research has found that certain immune cells known as mast cells—which also play a role in causing allergic reactions—could be key to causing the inflammation seen with rosacea. And it’s possible that finding a way to stabilize these cells could lead to new treatments.

As mysterious as rosacea still is to researchers, the most concerning question is why so few people who have it are seeing their doctors about it. A 2016 study estimated that only 18% of Americans with rosacea have been treated, while other research has suggested that it’s more commonly undiagnosed in people who have darker skin color (one likely reason why is that the flushing and redness is harder to notice). We still have a lot more to understand about rosacea. But there’s already an readily apparent thing about it that people should know, Baldwin says: rosacea doesn’t have to be endured in silence.

“I have had patients who come in with bright red faces for treatment of a wart on their toe. And when I point out that they’ve got redness, they’ll say, ‘What redness?’ Or they’ll say that this just happens in their family, that there’s nothing wrong. And I’ll say, well, no, that’s rosacea, and we can fix that if you want us to,” she said. “So improved awareness, I think. is the very first step. When they come in, it’s important for them to realize that this is a disorder, it’s not a disease, and that we have excellent treatment for it now.”

The journey to demystifying rosacea continues. And as Baldwin points out, awareness is the first step towards change. With the right knowledge, anyone can seek the care they deserve.

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