‘I felt really alone’: Monkeypox patient turns to TikTok to document illness

When California resident Jeffrey Todd found a strange bump on his cheek, he assumed it was a pimple. But after several days, he began to notice a raised ring appearing around the bump. That sent up some red flags.

“It looked very much like a picture I had seen on the CDC website,” Todd told CBS News on Tuesday. That same evening, Todd noticed a series of similar raised bumps running up his arm and back. To make matters worse, he began to experience something distressing symptomsincluding body aches and “severe” shooting pains down the back and into the legs.

The next day, the doctors had a probable answer for him: monkeypox.

Monkeypox, a virus similar to smallpox, has been identified as a disease that can cause weeks of painful rashes and lesions for those who contract it. While a large majority of cases have spread from men who have sex with men, the disease can be spread through skin-to-skin contact or contact with contaminated materials such as towels and bedding.

“They said just from the symptoms alone it was pretty much monkeypox, but they wouldn’t know for the next two days,” Todd said. “They advised me to go into isolation.”

Instead of a positive test and immediate medical attention, Todd spent the next nine days trying to cope with his emotional struggles and a medical system he described to CBS News as scary and ill-informed.

“The doctors were misdiagnosing me left and right,” Todd said, mistaking his symptoms for a staph infection or methicillin-resistant Staphylococcus aureus, or MRSA. Doctors treated him for these bacterial illnesses, which led to an allergic reaction to one of the medications he said “just made things worse.”

Even after being told he had tested positive for monkeypox, he still struggled with treatment. Todd said he was told by his doctor that his monkeypox sample had been mishandled and never tested, preventing him from receiving a timely prescription for TPOXX, a experimental treatment some doctors believe can reduce the healing time in monkeypox patients.

Todd said he was eventually able to get the medication, which he believes helped him feel better, but said the experience was still difficult.

“I felt very alone,” he said. “People didn’t have the right information and nobody really knew what to do.”

So Todd turned to the social media app TikTok. Throughout the 28 days in quarantine, he made countless videos documenting his symptoms and the progression of his lesions as they turned from bright red to dark black spots. These videos, which contain images that may be disturbing or graphic to some viewers, have received hundreds of thousands of views.

The news comes after a renewed response from national and international health authorities about the disease that is spreading. 23 July became the World Health Organization declared The monkeypox outbreak a global emergency, the organization’s highest level of preparedness.

In the United States, there have been over 9,000 cases of monkeypox recorded and the White House has declared the disease a public health emergency. Now health officials and providers are focused on vaccination work.

“Fortunately, no one has died, so we’re still at a point in this outbreak where I think while it’s very serious, it’s not something that’s cause for widespread alarm,” said White House Covid Response Coordinator Dr. Ashish . Jha told “CBS Mornings” last week. “The goal of this is still to eliminate this virus – to bring it under control and eventually eliminate it. In terms of vaccines, we have significantly increased the acquisition of vaccines from abroad.”

While Todd said he is currently in better spirits and is expected to leave quarantine Tuesday, the California resident called the entire experience “emotionally distressing” and called for better information and faster response times from health care and government officials.

“I really wish the Biden administration and our government officials would take it more seriously,” Todd said. “There was too much waiting, too much pause, too much indifference there.”

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