4/24/2020 by Share Your Story

Jason: Coronavirus and False Negatives

Kate travels (virtually) to Toronto this week and talks to chronic illness patient Jason, whose father may have had a false negative Covid 19 test.


Coronavirus, Canada and False Negative Covid Testing

Here at Patients Rising, we love when community members reach out to us about their challenges seeking access to healthcare. This past week, I took my adventures into the world wide web and spoke with Jason, a patient advocate in Toronto. Our full story appears on this week’s episode of the Patients Rising Podcast. As always, if you’d like to jump online and chat about your experience, we want to hear from you! Email us at info@patientsrising.org to share what you have been dealing with in recent weeks.

Though his story veers a bit North of my normal trips across America, his experience reinforced the comradery that the global patient community is facing through the COVID-19 pandemic.


JASON

Jason lives with fibromyalgia and postural orthostatic tachycardia syndrome (POTS). Like others with chronic disease, Jason has chronic pain and fatigue. Recently, he began a podcast (“Discomfort Zone”) to document his experience with these invisible illnesses in an attempt for outsiders to better understand what chronic patients face daily including seeking access to healthcare.

Jason

Jason

On his most recent podcast episode, Jason revealed that his father was potentially experiencing the novel coronavirus, which was especially worrisome since they live in the same house and Jason has a compromised immune system.

SICKNESS COMES HOME

In early March, Jason’s father returned from a trip to Cuba with flu-like symptoms. Initially, it presented as a dry cough and fever. But the symptoms began to ramp up rapidly. After a few days, Jason’s father was tested for Coronavirus at one of the Canadian Health Clinics. He recalled the experience as overwhelming, saying “If you didn’t have COVID-19 walking into that clinic, you almost certainly had it walking out.”

After a few days of waiting for the results, they received a diagnosis of “likely influenza A”. It was hard to believe considering the terrible symptoms that he had endured for the past few weeks. Jason’s father remembered the restless nights gasping for air, wondering if he should go to the hospital to seek treatment.

FALSE NEGATIVE COVID TEST

Once their family had consulted with physicians, it was determined that the initial testing most likely concluded a false negative covid result. False negative COVID-19 tests are a seriouos problem around the world. False negatives can cause individuals who are actually positive for COVID-19, to contaminate healthy populations.

In this case, their family was extremely cautious, especially with the increased risk to Jason. Jason and his mother avoided contact with his father, who quarantined in their basement through his symptomatic period. Still, Jason lived with fear of being exposed prior to his father showing symptoms. Fortunately he has had a clean bill of health since.

His family’s goal is to soon test for antibodies and see if Jason’s father is potentially immune to contracting COVID-19. This would answer whether he was actually exposed. It would mean that his father could take on some of the essential household duties like grocery shopping, without worrying about his personal safety.


Kate PecoraKate Pecora is a senior honors student at the University of Massachusetts Amherst studying Healthcare Policy and Political Science. She is an advocate for rare diseases, primarily in the neuromuscular space. Kate is diagnosed with Spinal Muscular Atrophy Type III. She is currently traveling across the country (sometimes virtually) finding compelling stories of patient access, affordability, and quality. Ultimately this will become a book that will educate students on the importance of patient perspective. Instagram Facebook Twitter


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