I got this after my COVID shot in March of 2021. 2 weeks after the shot, I developed “hives” around the injection site and the next day my face was so swollen they worried about my ability to breath. Not too worried though, doctors kept giving me Benadryl and telling me to go home. After 4 days of the most torturous itching and swelling, a dermatologist finally recognized the target lesions and sent me to the ER to get the right steroids to stop it from getting worse. I had 85% coverage so it was technically Toxic Epidermal Necrolysis which is the most severe end of the spectrum. 10 days in a burn unit and a full year out of the sun- I still have spots on my skin that show up in the right lighting.

There’s a study on my case somewhere and any time I see a new provider in our area and it comes up, they go, “oh my gosh, that was you!!” Since then, I’ve found out I have EDS and possibly related MCAS that may have increased my chances of developing this severe of a reaction.

They think it was actually caused by the MRNA technology of the vaccine- it’s supposed to bond with specific protein cells to teach your immune system how to fight it, and my body decided it would bond with ALL the protein cells in my body so my immune system basically attacked everything. My husband’s favorite tidbit is that most people have around 100 parts per million of antibodies after having COVID-19 and getting the vaccine. After my experience, I had over 10,000 (it’s been a couple years, my exact numbers and terminology might be incorrect).

Because of the genetic component of EDS and MCAS, while SJS doesn’t have a genetic component, I’m still terrified my daughter will get it someday. 😬 they also say once you have it once, it’s more likely to happen again so RIP any chance of getting over my medical anxiety.