I was a completely healthy individual until I got the flu vaccine in October 2019. I was tired and a little achy the next couple of days after but did not think much of it. Three days after receiving the vaccine, my eyes swelled shut. I went into the local emergency clinic and it was suggested that I had a contact allergic reaction to something. I was given IV steroids and IV antihistamines and sent home. The next day, I developed a fever and sores in my mouth. After getting assessed again at the emergency clinic, I was sent home to recover. They thought I just had a cold or flu.
I kept getting progressively worse after I went home. More sores developed in my mouth, so much so that I was unable to eat. I had no energy and was in bed all day. I went back to the emergency clinic and was sent home again even before getting assessed as they said there was a 5 hour wait time and I was told I just needed fluids and rest. The next day, I started getting rashes on my torso. After 5 days from initial symptoms, and 4 emergency visits, they finally admitted me to the hospital. I was diagnosed with SJS by the admitting internal medicine doctor and was in the hospital for 10 days. During my stay, none of the doctors or nurses have ever heard of SJS and all they could do for me was ease the discomfort and pain that I was in as there is no actual treatment/cure for SJS.
Today, I am mostly recovered except for my eyes and mouth. I have no tear function so they are extremely dry and sensitive to light. I’ve had 3 corneal ulcers because of this, and I am still waiting for the ulcers to heal so that I can pursue other treatments that will ease the dryness. My mouth is healed; however, they are still extremely dry. It definitely has been an emotional journey and I am grateful to have found this SJS group.