On 11 June 2022, Harun Tulunay fell ill with fever. At first, he thought he had COVID-19, but then he started to worry that it felt like something else.
“My lymph nodes felt achy, really painful and swollen. My fever went up to 39.6 °C. I was taking ibuprofen and painkillers to keep myself from shivering. On day 5, I just lay on the sofa, unable to move, unable to sleep. I felt alone and the pain was unbearable.”
A few weeks earlier, several cases of monkeypox had been detected in countries in the WHO European Region. As of 14 July, the total number of confirmed monkeypox cases in the Region exceeded 8900. France, Germany, Spain and the United Kingdom have reported the highest numbers, but cases have been reported from 35 countries and areas throughout the Region.
“When referred for a monkeypox test at a sexual health clinic, I only had one blister on my nose. It started out the size of the tip of a pen, and then just got bigger and more painful. Due to the lesions in my throat, I couldn’t swallow, eat or drink. That was painful,” Harun says.
Monkeypox is usually considered mild and most people recover within a few weeks without treatment. However, the disease is frequently uncomfortable or painful, and can sometimes lead to complications that require close medical follow-up. This was the case for Harun, whose symptoms worsened after being admitted to hospital.
“After my tests for monkeypox came back positive, I was sent to an isolation ward in another hospital specializing in infectious diseases. All I felt was relief because now I knew what I had. But I was still scared because even though I am a sexual health advocate, I never thought that monkeypox could be this severe. The level of pain surprised me. I also realized how alone I was. I couldn’t have friends or family visit me. I thought that if I died from this disease, I’d die alone.”
For 10 days, Harun was treated with tecovirimat, an antiviral agent developed for smallpox and now licensed for monkeypox by the European Medicines Agency (EMA). More international data on its efficacy for the treatment of monkeypox in humans is urgently needed.
“All the unanswered questions took a toll on my mental health. I’d never been hospitalized before and the uncertainty around the disease was stressful. I was on heavy pain killers, on antibiotics because of a secondary bacterial infection, and being fed through an intravenous drip. All I wanted was for the pain to go away,” Harun explains.
“Even now, talking about the scars monkeypox could leave makes me emotional. I don’t want to carry scars reminding me of this horrible month. I don’t want to look at myself in the mirror and see this.”
The primary measures to control the outbreak are contact tracing and isolation. It is very important that people confirmed with monkeypox disclose their contacts so they can be alerted to monitor for symptoms.
“When I told my friends and colleagues that I had monkeypox, everybody was so supportive and trying to help me.”
The current outbreak in the WHO European Region is of concern because it is not typical of previous outbreaks. Studies are underway to better understand the epidemiology, sources of infection and transmission patterns.
Raising awareness is currently the main prevention strategy for monkeypox. Newborn infants, young children, pregnant women and people with underlying immune deficiencies may be at risk of more serious symptoms and, in rare cases, death.
“We always think it’s not going to happen to us. Doctors and scientists are amazing, but if someone who’s been on the same journey can tell you what to expect – now that’s important,” Harun points out.
“Having lived with HIV since 2016, I know how healing it is to hear other people’s stories. That’s why I wanted to share my story about monkeypox, still a relatively unknown condition. I didn't know anything about it when I caught it. In the end, I don't want anyone to have this. I also want to show people that I am okay. Yes, it was severe, but I am better.”
Harun has advice for the public
“I want people to watch out for themselves. Be considerate, kind, and isolate if you have symptoms. Be alert and watch out for symptoms such as rashes, fever and muscle aches. Also, be your own health advocate and know your rights. There is a vaccine available, so ask for it. And if you have monkeypox, ask for treatment.”
If you live in a country where the vaccine is available to you and your close contacts, take it. If you think you have been exposed to someone with monkeypox, immediately contact your doctor or health-care provider, who will be able to provide you with the right advice.
For people who are contacts of cases, WHO recommends post-exposure prophylaxis with an appropriate second- or third-generation vaccine, ideally within 4 days of first exposure.
Depending on the availability of a vaccine, some countries also include strategies for vaccinating all people at high risk of exposure, as determined by the epidemiology.
Understanding monkeypox prevention and treatment
While close prolonged physical contact is a known risk factor for transmission, it is currently unclear whether monkeypox can be transmitted specifically through sexual transmission routes. Studies are needed to better understand this risk.
Scientific studies are currently underway to assess the feasibility and appropriateness of vaccination for monkeypox prevention and control. Some countries have taken or are developing measures to offer a vaccine to people at risk of contracting the disease, such as laboratory personnel, rapid-response teams and health workers. Tecovirimat is not yet widely available.
WHO works with affected countries, facilitating information-sharing and supporting surveillance, testing, infection prevention, clinical management, risk communication and community engagement. WHO also works with vaccine manufacturers to assess the potential for scaling up monkeypox and smallpox vaccines if there is a need to vaccinate those most at risk or those who could potentially suffer more severe disease consequences.