Julie Sciascia-Van Horn was hospitalized by COVID-19 in early April, suffering some of the typical flu symptoms related to the virus since its discovery: fever, severe cough and shortness of breath.
Then came here a litany of more diseases than the 51-year-old man from the southwestern suburb of Bridgeview had never experienced before contracting the new coronavirus.
He described a burning sensation on the floors of his feet, as if he were walking on charcoal. Two weeks after being discharged from the hospital, she began to realize the loss of memories, inexplicably forgetting phone numbers and similar data about the regime when remembered effortlessly.
Then, during the summer, her hair began to fall out, with long brown tufts filling a brush or surrounding the shower drain.
“I had another symptom every day, ” said Sciascia-Van Horn. “I wonder, what is it?”
As medical experts and scientists strive to perceive the new virus, some patients report a wide variety of symptoms found on official lists published through the Centers for Disease Control and Prevention and other fitness authorities.
Often, these situations appear or disappear without warning and persist for months after the virus has disappeared.
At the beginning of the pandemic, maximum medical efforts were aimed at keeping the sickest patients alive and relieving overcrowded hospitals, but there is now a growing need for long-term fitness studies for those who survived the virus, but who do not seem to be achieving results. a full recovery, said Natalie Lambert, an associate professor of studies at Indiana University School of Medicine.
“It’s simple that everything we know about medicine and each and every evolved medical remedy is Array. . . because a patient somewhere was suffering and needed help, he needed a remedy,” said Lambert, who studies long-term health. Consequences of COVID-19 “The only explanation for why we have medication and one way to treat patients is because the studies were conducted with patients in the first place. “
Many coronavirus patients express their frustration as they battle a new and mysterious disease with no roadmap and very little history. Unpredictable symptoms, typical outdoor diagnostic criteria, are cited as a non-unusual source of stress.
In his work, Lambert went through the diversity of medical disorders reported through patients, as well as through the number of other systems within the framework that appear to have an impact.
Hair loss. New rashes and skin conditions Unexplained cognitive problems. Heart problems. Increased anxiety, strange smells and flavors that don’t go away, relentless insomnia.
In some cases, these diseases appear or persist months after the virus is intended to disappear, without an express time limit for relief.
“Did they smell sulfur in their noses and breath?” wrote one woman on the Facebook page of Survivor Corps, a central organization of more than 100,000 members who have been affected by the virus. “The test was positive, I have 29 days from my first symptoms. of COVID and the last seven days I’ve had this horrible smell. “
“Numbness in my body and face — as of this morning, 80% of my body is absolutely numb,” the member said on the site. “I’ve been suffering terrible post-COVID symptoms since June. They went up and down, I felt older (then) I crashed, up and down, up and down. “
“I say we’re sending all our huge amount of hair to the CDC,” wrote another, under a photograph of one hand holding a giant lock of hair.
Survivor Corps founder Diana Berrent will host a webinar with Dr. Anthony Fauci on Friday, asking questions on behalf of the organization of the country’s most sensitive infectious disease experts on the virus.
Fauci warned the country about the possible long-term effects of COVID-19 on fitness, most recently at a hearing of the US Senate subcommittee on fitness. But it’s not the first time Last week.
“Several Americans who have recovered virologically from an infection have patience, measured in weeks or months, of symptoms that don’t seem to be due to the patience of the virus,” said Fauci, director of the National Institute of Allergy and Disease Infections.
Sciascia-Van Horn is also a member of Survivor Corps, where he said he discovered and treatment tips.
“I know what I am and I’m not the same,” she says. “And I’m tired of not being the same. I need to be what I used to be.
Spectre of symptoms
Some patients with COVID-19 will have no symptoms. Others will suffer health problems fairly quickly: some 200,000 Americans, more than 8,000 from Illinois, have died from the virus and the number of people killed abroad by the pandemic exceeded one million on Tuesday.
But there is another category of patients like Sciascia-Van Horn, who do not yet seem to fully recover weeks or even months later.
They have been called the “long distance” COVID-19, and their experiments do not always seem to fit the existing CDC list of a dozen coronavirus symptoms. However, the firm notes that this description “does not come with all imaginable symptoms”, and the list will be updated with new data on viral surfaces.
Lambert began reading the fate of the long journeys shortly after the pandemic outbreak, in partnership with Survivor Corps to be more informed. In July, she and Survivor Corps surveyed more than 1,500 patients who knew that 98 symptoms they experienced after contracting a coronavirus, many of whom were not on the official CDC list.
“It has become almost transparent that the list of symptoms on the CDC’s online page and the symptoms reported through the patients were not a perfect match,” Lambert said.
Self-reported situations cover a wide range: 924 respondents reported difficulty concentrating; 714 described problems of reminiscence; 566 reported joint pain; 509 central palpitations; 423 reported hair loss; 418 reported blurred vision and 247 developed some form of rash, among dozens of other situations.
The diversity of considerations and limited data can make processing difficult.
Some long-distance carriers find that “doctors can’t or don’t want to help patients manage lesser-known symptoms of COVID-19 due to a lack of study,” a survey-based report said. Until studies are conducted on long-term symptoms of COVID-19, these effects mean that an increasing number of patients with COVID-19 continue to suffer from their undated symptoms.
So many questions arise after the investigation, how many of these situations are similar to COVID-19 ?, are trauma and anxiety a factor?Is the underlying physical condition of the patient similar in any way to symptoms?Aren’t there unusual themes or models that can give scientists clues about the virus?
To explore further, Lambert said he is coordinating another survey with deeper questions about patient demographics, underlying fitness situations, and detailed data on each reported symptom. The ultimate purpose would be predictive modeling: to check for situations that other types of COVID-19 patients may experience, in all likelihood, find out the sequence of symptoms.
“Imagine if we knew it’s very likely that a specific patient will lose their hair or have problems downtown,” he said. “We may simply review to help others avoid those symptoms. “
Another merit is to classify the severity of ailments, so that medical experts can better address the most painful or disruptive problems.
“Making sure long-term COVID-19 studies actually meet patients’ most urgent desires,” he said.
Mysteries of the virus
Sciascia-Van Horn said he was surprised when he tested positive for coronavirus, in part because many of his illnesses did not meet official criteria at the time.
In addition to influenza-like disease, it complained of nausea, gastrointestinal disorders, congestion and transient loss of taste and smell. All of those symptoms are now on the CDC’s list, but they weren’t added until after Sciascia-Van Horn symptomatic expired March.
COVID-19 was primarily thought of as a respiratory disease at the expiration of 2019, when early human instances gave the impression in Wuhan, China.
“Coronaviruses are an elegance of respiratory viruses ranging from colds to more serious diseases such as SARS and MERS,” the Illinois Department of Public Health said in a January press in which he pronounced the state’s first patient to test positive for the virus. “They can cause fever,” cough, breathing difficulties and pneumonia. “
The description has evolved as scientists and clinicians have learned more about patient experiences, but this procedure can be time consuming and frustrating for those who are in poor health and feel marginalized when official rules do not correspond to their reality. .
Last March, the American Academy of Otolaryngology-Head and Neck Surgery reported that coronavirus patients felt a loss or reduction in the sense of taste or smell.
“We propose that these symptoms be added to the list of equipment to detect an infection imaginable with COVID-19,” the organization of ear, nose and throat specialists said in a statement.
The CDC added taste and smell loss and several other symptoms to the list in mid-April, many local doctors and hospitals reported using those criteria before the change. Congestion, nasal discharge, nausea and diarrhoea were added in mid-May.
Now, more COVID-19 patients describe excessive hair loss, rashes and new skin problems. A video of actor and political activist Alyssa Milano showing off her post-COVID-19 hair loss went viral last month.
Put on a mask, he says at the end of the clip.
Dermatologists around the world are looking for more data on hair loss, rashes and a condition called “COVID feet” (swollen and discolored feet) after contracting the virus. The American Academy of Dermatology, founded in the northwest suburbs of Rosemont, includes on its online page images of some of the itchy rashes, lumps or hives that dermatologists see in patients with COVID-19.
The organization is in the process of compiling a COVID-19 record, encouraging physicians around the world to respond to a survey of their patients’ experiences. One question says: has the patient had skin, nails, hair, mucous membranes or new ones?dermatological adjustments in the context of a COVID-19 imaginable or shown?
As for Sciascia-Van Horn, he has regained his sense of taste and smell, his feet are no longer on fire. He said his hair was developing slowly, with some sections noticeably shorter than others.
But he described persistent reminiscence problems, chronic fatigue, breathing difficulties and higher degrees of anxiety. You still can’t breathe deeply and feel breathless after climbing stairs or walking your dog to the end of the block.
Six months after his first symptoms, he said he was far from cured.
“Please be careful, ” he said. Please take care, wear the mask. Listen to those of us who have COVID and still have symptoms, and the other people who lost their lives. Aren’t you dressed in a mask of courage? We all don’t know what this virus is. “
eleventis@chicagotribune. com
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