Guest post by Jen Roberts Holidays are often portrayed as this ideal, cheerful and cozy time spent with family. But real life doesn’t always end up that way. It tends to be a mixed bag with some highs and lows. When you are grappling with the losses associated with a complex, invisible illness, it is […]
Category: Community
Pediatric Long Covid: Caregiver Survey June 2022
Our Pediatric Caregiver survey is intended to collect community information from caregivers of kids under age 18, who have Long Covid, in the United States.
The Price of Reinfection
My son started sneezing, coughing, and had a runny nose, again…
I kept my kids home for the 2020-2021 school year with the uncertainty of COVID. My motto has always been better safe than sorry and we have family who are considered very high risk.
But despite our restricted contact with the outside world, our family got COVID in the Fall of 2020. And before I even knew that Long Covid was an alternative to recovery, I was experiencing bizarre symptoms that made me scared that something was very very wrong with my heart.
After many doctors, specialists, and testing, I was diagnosed as a Covid Long Hauler.
The Protectors: #WhyWeMask
We love a hero story. We watch the movies and read the novels that celebrate their bravery. We reenact their legend on the playground as children. We all want to believe we could be the heroes, that in a moment of crisis we would do the right thing. But the best hero stories are the […]
The Lie in Returning to Normal
Privilege as Policy Hurts Everyone Remember when we were doing “we’re in this together” sidewalk chalk and cheering for healthcare workers every evening? I think I had this hope that we really were “in this together.” I had this desperate optimism that this would be a turning point, that finally people would understand a little […]
When Illness Redefines Family
There’s the family you’re born with, and there’s the family you choose … is a comforting re-framing for people who have experienced loss, grief, or estrangement. And it’s true, we can choose our families. Friends and neighbors can become woven into our lives in beautiful ways. For chronically ill people, it’s less about choosing people […]
Pediatric Long Covid: Caregiver Survey December 2021
Demographics In December 2021 we polled caregivers of kids, under 18, with Long Covid. Thirty-four (34) families participated with the following demographics. 64.7% stated to have official Long Covid diagnosis from their doctors.
Impact on Schools
For Educators:How is Long Covid impacting schools and what can we expect in the future? 1. Recognition of Long CovidThere are children who are struggling with disabling symptoms that can be difficult to describe including difficulty with cognitive function. 2. Future resources required by the schoolsWith 10-15% of children developing Long Covid symptoms post Covid-19 infection – […]
Tell Us Your Story
Long Covid Families is collecting and amplifying the voices of Long Haulers. Our team has put a lot of thought into how we would like to tell patient stories. We believe it’s important for the public to understand the seriousness of the illness, that we do need support, but our population does not see itself […]
