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sjsandtensgroupcan

Jeremy’s story

Updated: Jul 19, 2023


I had a bacterial infection in 2005. After 13 days of taking antibiotics, I developed a lot of bumps on my body, my face swelled up, my eyes and throat started to feel inflamed and irritated. I went to the doctor and was told I had an eye infection and was given sulfa (an eye drop) in addition to the oral sulfa antibiotics that I was already taking. Soon the skin around my face started peeling so I took a picture and sent it to my dad and brother. My brother’s pharmacist friend told him I was having a severe allergic reaction to the medication while my dad and I read up on the side effects of the antibiotics I was taking.


By the time I was admitted to the hospital, my eyes were swelled shut, my skin was peeling, and raw from my scalp to torso. At the hospital, doctors stitched amniotic membrane to my eyes in the hopes that I would not lose my vision. I stayed in the hospital for 13 days. After one month they removed the stitches from my eyes but although I was able to see, I could hardly open them since they had become extremely photophobic. In 2012, I met Dr. Chiu who introduced me to PROSE contact lens which allowed me to open my eyes more and drastically reduced the photosensitivity. These lenses have also helped to decrease the irritation and redness of my eyes. Furthermore, I had cataract surgery for both my eyes. My skin has healed although my nailbeds are damaged and fragile.


As part of my recovery, I started to hike and became a runner. I was able to train and run many organized races including two marathons. In June 2020, I joined the SJS Canada group and have been delighted by the support that the group provides for each other. Sonia’s care and attention to the members of this group is greatly appreciated, and her leadership has helped gain awareness and momentum for the SJS community. It has been a pleasure to be a part of this group.

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