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«The rash has appeared everywhere; at first it looked like mosquito bites, then it developed pimple blisters that burst. During the night I woke up going crazy with pain and itching. I was very sick, but I had to make my own care plan “- in the Guardian, Sebastian from New York recalls his fight against monkey pox and the care system unprepared for another epidemic. “The whole thing seems like a huge failure that shouldn’t have been allowed,” says the man.
- World Health Organization Recognizes Monkey Pox as “A Global Health Threat”
- Monkey pox is a zoonotic viral disease. Symptoms include fever, headache, and a skin rash that begins on the face and spreads to the rest of the body.
- In the pages of «The Guardian», 39-year-old Sebastian told about how he contracted monkey pox. “It was a total nightmare,” he says, also referring to the struggle for care from the health system
- “The whole thing seems to be just a huge failure that should not have been allowed” – he evaluates what happened to him
- More information can be found on the TvoiLokony home page
“I had no idea how bad it would be”
Sebastian is 39 years old and lives in Brooklyn, New York. “For the last decade my work has been primarily on health, sexual and reproductive rights, so I have followed the epidemic from the very beginning,” begins a story that recently appeared in The Guardian. The man decided to talk about how he contracted monkey pox. “It was a total nightmare,” he says directly, and he does not only mean the suffering associated with the disease itself, but also the struggle for care from the health care system.
«On July 1, I started feeling very tired. I had a high fever with chills and muscle aches. My lymph nodes were so swollen that they protruded from my throat »recalls Sebastian. The COVID-19 test turned out to be negative, with monkey pox being another suspicion.
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Two days after the appearance of these ailments, there were more, this time around the anus. «At first it was a stinging, itching. At that moment I was not afraid (…) But I had no idea how bad it would be »- he recalls. During the teleportation, the doctor ordered tests. “I had all the symptoms of monkey pox, and luckily no one questioned whether I should get the test … But I didn’t understand how limited my testing ability was: at this point, the city could only analyze 10 tests a day.”
The situation was complicated by the fact that the antiviral drug used to treat monkey pox could be obtained after a positive test result. “So they sent me home” with a painkiller and an antipyretic.
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«I screamed when I went to the bathroom»
Meanwhile, the rash began to spread throughout the man’s body, and he himself became more and more concerned. «Changes have appeared everywhere; at first they looked like mosquito bites, then developed into pimple blisters that burst into scabs. I had them on my skull, face, arms, legs, feet, hands, torso, back » – he says. “At the peak, I had over 50 lesions, a fever of 39,4 degrees Celsius and severe pain, which led to a panic attack.”
Then there was hives all over my body “from the neck down”, there was a headache, joint pain in my fingers and shoulders, and “a strange pain in my shinbone that became so severe that I couldn’t get up”. “During the night I woke up going crazy with pain and itching,” she recalls. In addition, the lesions around the anus turned into open wounds. «It was absolutely terrible. I literally screamed as I walked to the bathroom. Even keeping this area clean, washing myself, was extremely painful. Each time it was a two-hour process ».
He describes his situation in one sentence: «I was isolated, lonely and frustrated by the injustice of the situation. I was clearly very sick, but had to make a care plan myself » – he tells in «The Guardian».
“I was one of the lucky few who was invited for treatment”
Four days after the monkey pox test, Sebastian received a call from urgent medical care: the result was positive. «But otherwise they didn’t give me any information. So I started calling to find out how to get access to antiviral drugs ». Unfortunately, it was still sent to various places without any effect. «Then my throat started to swell, my tonsils were covered in pus. At the Emergency Room, they said it was bacterial tonsillitis, “they gave me a series of antibiotics”. “But when I asked them for antiviral drugs, they said they would not give them to me because only severely immunocompromised people receive them.”
The situation changed unexpectedly the next evening. «Finally I got a call from a clinic at Irving Medical Center at Columbia University. They said the health department asked them to look into my case. Apparently, I was one of the lucky few who was invited for treatment»Says Sebastian. He spent about an hour in the clinic, «I left with a two-week supply of monkey pox medication. I am so relieved ».
«The day after starting treatment, on July 13, a person from the health department finally phoned me to say that I may have been at risk of monkey pox. I told her I already had a confirmed illness and she asked about my symptoms. The conversation lasted about half an hour and apparently she was reading the script »describes Sebastian, adding:« She didn’t even ask what my contacts were ».
Fortunately, the use of the drug began to bear fruit. «The lesions started to dry up very quickly, I only had three small scabs left. Only in the last few days I have been able to go to the bathroom painlessly »admits the man.
Assessing what happened to him during his illness, he says openly: «The whole thing just seems like a huge failure that should not have been allowed to happen. If someone like me, who has been involved in sexual health for a long time, has had such a hard time “navigating the healthcare system,” I can’t imagine how other people are doing. I know a few people who just sit at home and suffer excruciating pain because they are not getting the support they need ”.
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