Today is my daughter’s two year #covidversary. She was 16 when she infected, and I fought hard to get her tested. Everyone said kids don’t get #COVID. But I knew they were wrong. Because I was looking at a kid with COVID. 1/
I decided to make her story public, because I knew that if my child was sick & couldn’t get tested, then there were many other families in the same boat. huffpost.com/entry/coronavi… 2/
We finally were able to test on day 14 of her illness, and day 5 of mine because I was high risk due to having MS. My test was positive. But Molly tested negative, because we missed the testing window. I had wanted her case counted, but it never was. 3/
She was acutely sick for 3 wks, then had lingering symptoms for a few months, a scary relapse at 4 months on her 17th birthday. But then she improved. I had terrible long COVID symptoms, but I breathed a sigh of relief because I thought my daughter was better. 4/
I was wrong. A year after her initial infection, she went back to in-person school and she immediately was hit with classic long COVID symptoms that she had never had before. She could not go to school two days in a row because she was too sick. 5/
Molly has been diagnosed with POTS and ME/CFS. She is in college now, and she is going to a long COVID clinic, but the care is not coordinated and no one has any answers. And she continues to struggle with shortness of breath, low stamina, and chronic illness. 6/
My daughter was a healthy teenager before she contracted #covid19. I do not know what her future holds. But as horrific as my own long COVID has been, it is ten times worse watching my child struggle and not being able to help her. 7/
And she is one of the millions whose case was never counted. We need to do better as a nation. We need to #countlongcovid now, help schools meet the needs of students who need #accommodations, improve our long COVID care & research, & support longhaulers. 8/
And we need to listen to patient advocates @C19LH_Advocacy @MarkedByCovid @itsbodypolitic @patientled & more. We have been living this nightmare for 2 years, and we have done the research. We know the level of devastation and we know what changes are needed. 9/9
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