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Sharing Monkeypox Sores on Social Media

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When Matt Ford, 30, an actor in Los Angeles, tested positive for monkeypox in June, he posted videos on Twitter and TikTok to show what it was like.

Wearing a gray T-shirt and looking straight at the camera, he offers viewers up-close “dirty spots” all over his body, including his face, arms, stomach. He also mentions “a few in my more sensitive areas, which also tend to be the most painful.”

“It was so painful, I had to go to the doctor and get painkillers just to sleep,” he added, before mentioning other symptoms: sore throat, cough, fever, chills, night sweats, swollen lymph nodes.

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While people often use social media to present an idealized version of themselves, displaying someone’s warts – or in Mr. Ford, some of the “more than 25” dark lesions on his body – perhaps unusual.

“The reason I speak,” he says in the video, “is mainly because knowing there is an outbreak of monkeypox happening, but it is another thing to know exactly what it means to a person’s body and especially what it means if it happens to a friend or you.”

Silver Steele, 42, an adult film actor in Houston, took to Twitter to share his highly graphic and personal diary of monkeypox, including an intimate selfie in July that showed eight blueberry-sized sores clustered under his lips.

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Also in July, Camille Seaton, 20, a gas station cashier in Smyrna, Ga., garnered more than 10 million views in a series of TikTok posts detailing her battle with monkeypox. One of them started with Ms. Seaton covered his mouth with his hand as he said, “Trigger alert.” Then he revealed the lower half of his face which was covered with nearly a dozen wounds.

Viewers have responded with heart and thank you emojis, but the reactions have not always been sympathetic. Conspiracy theories abound.

Jeffrey Todd, 44, a casting director in Los Angeles, announced his diagnosis of monkeypox in late July, including a video in which he removed a bandage from his face to reveal purplish lesions. One commentator accused him of being an actor hired for Pfizer.

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Let alone that Tpoxx, the only drug prescribed to treat monkeypox, is produced by Siga Technologies. (The drug, which is only approved for smallpox, is used off-label, and only sparingly.) Mr. Todd said the video was temporarily deleted by TikTok, but was restored when he made another video addressing the haters.

In some ways, the video is reminiscent of the early days of AIDS, when women like Elizabeth Glaser and Alison Gertz joined activist Larry Kramer and artist Keith Haring as prominent spokespeople for those living with HIV.

What to Know About Monkeypox Virus

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What to Know About Monkeypox Virus

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What is monkeypox? Monkeypox is a virus similar to smallpox, but the symptoms are less severe. It was discovered in 1958, after an outbreak occurred in monkeys kept for research. The virus is mainly found in parts of Central and West Africa, but has recently spread to dozens of countries and infected tens of thousands of people, mostly men who have sex with men.

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What to Know About Monkeypox Virus

How is it spread? The monkeypox virus can be spread from person to person through close physical contact with infectious lesions or pustules, by touching items – such as clothing or bedding – that previously touched the rash, or through respiratory droplets produced by coughing or sneezing. Monkeypox can also be passed from mother to fetus through the placenta or through close contact during and after birth.

What to Know About Monkeypox Virus

I’m afraid I might get monkeypox. What do I have to do? There is no way to test for monkeypox if you only have flu-like symptoms. But if you start to see red lesions, you should contact an emergency care center or your primary care doctor, who can order a monkeypox test. Isolate at home as soon as you develop symptoms, and wear a high-quality mask if you must come into contact with other people for medical treatment.

What to Know About Monkeypox Virus

I live in New York. Can I get the vaccine? Adult men who have sex with men and who have had multiple sexual partners in the past 14 days are eligible for the vaccine in New York City, as well as close contact with an infected person. Eligible people who have conditions that weaken the immune system or who have a history of dermatitis or eczema are also highly recommended to be vaccinated. People can book appointments through this website.

But the ability to draw attention to HIV and bring a human face to the disease is limited by a climate in which outside opposition to homosexuality is far more socially acceptable than it is today, and few platforms exist to circumvent mainstream media.

The speed at which people with monkeypox came out of the shadows had managed to feel completely current and very familiar. Indeed, like previous AIDS activists, many of these monkeypox patients said they would make public announcements to raise awareness and protest the government’s slow response.

“Forty years ago, we had a virus and people remained silent and scared,” Steele said. “This time, luckily it wasn’t fatal, but I refused to keep quiet. I have anger. I feel the Biden administration has dragged its feet.”

Promises of a vaccine are nearly impossible to come by, in part because government officials waited weeks to order a shipment, which is not being used in Denmark with its manufacturer, Bavarian Nordic. Others expired. On August 4, nearly two months after cases emerged in New York and Massachusetts, the Biden administration declared monkeypox a public health emergency. It comes almost two weeks after the World Health Organization made a similar declaration.

“Why did it take so long to declare a state of emergency?” said Mr Steele. “We could divert funds to accelerate vaccine production and distribution, and I can’t help but see a parallel between AIDS and this. Gay men are especially affected, the world is dragging its feet, and then two kids get it and suddenly it becomes a crisis. Why not a crisis when gay men have it?”

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Mr Todd, the Los Angeles casting director, said he was also motivated by what he perceived as government inaction. “At first, I wouldn’t say anything,” he said. “That’s a shame, I’ll just face it and keep quiet.”

But when he became symptomatic in July, he went to the emergency room to be tested. Six days later, Mr Todd was still undiagnosed and, after repeated calls, was told that the laboratory had disposed of his blood sample due to mishandling by the courier. “I feel like the medical community is really letting me dry,” he said. “I feel like no one in the government supports me.”

As he put it in a video: “Unfortunately, we are alone here. Now it’s up to us to educate ourselves and be vigilant.”

Others want to dispel the myths and shame surrounding the disease, which disproportionately affects men who have sex with men.

“I want to break that stigma,” said Maxim Sapozhnikov, 40, chief executive of Fashion to Max, a creative services company in Milan, which began documenting his monkeypox journey on Instagram in June.

But that didn’t make it easy to tell his family he had contracted it. “I didn’t tell them anything until I recovered,” said Sapozhnikov. “Actually, I blocked them on Instagram for about a week.”

Seaton, who in July was one of the first women in Georgia to test positive for monkeypox, wants to dispel the notion that women are immune. “Yeah, mostly boys get it,” he says in one of his videos. But sexual contact between men, she says, “isn’t the only way you can get it.”

Unable to go to work for almost a month, Ms. Seaton created a GoFundMe account, which has raised more than $17,000 and allowed him to pay his rent and medical bills, although most of it will be covered by his insurance. “The support I get overrides the bad things that have happened,” he said.

However, some of his viewers speculated, without evidence, that monkeypox was a hoax or that he contracted the disease because he was transgender. (Miss Seaton is not transgender; she only has short hair.) In response, she posted a video from 2019 showing her in the hospital after giving birth. “Be real,” he says, as the video cuts back to him in the present, standing in his living room. “That is my daughter.”

He continues to post videos warning that the virus will spread without more testing, vaccination and education. There is evidence that he may be right.

Nancy Nydam, communications director for Georgia’s department of public health, said that although 98 percent of last week’s 544 cases in the state were among men, the six women who tested positive had all done so in recent weeks.

“It came at a much more regular rhythm,” Nydam said.

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