Feeling Normal Again
Patient: Jen Ballard
Diagnosis: Stevens Johnson syndrome
Sight restored: 2016
There are many things about wearing BostonSight PROSE devices that make Jennifer (Jen) Ballard happy. The most unexpected one is how natural they look. “Originally I was devastated to learn that I needed ocular prosthetic devices,” remembers Jen. “I just wanted to be normal again.”
Jen, who has lupus, developed a potentially deadly MRSA (methicillin-resistant staphylococcus aureus) infection. She was transferred from her local hospital in Maine to Brigham and Women’s Hospital in Boston. Although Jen is allergic to penicillin and other related medications, her doctors thought that the danger to her from the staph infection outweighed the risk of giving her nafcillin.
Shortly after starting on the nafcillin therapy, Jen developed Stevens Johnson syndrome (SJS), a sometimes fatal, violent allergic reaction. SJS sufferers most often react to medications, but SJS can also be caused by infections and environmental factors such as radiation; in some cases, the cause is never determined.
As is so often the case with SJS, doctors initially did not know what was wrong with Jen, and so the nafcillin was not immediately discontinued. She spent the next four months in the hospital; most of her stay was spent in the burn unit.
Jen had lost a significant percentage of her skin and suffered with extreme eye pain (SJS affects the mucous membrane tissue that lines many body cavities – including the eyes). “The pain was something that I can’t even describe. In retrospect, it doesn’t even seem real,” Jen remembered. She lived in complete darkness, with her mother on hand to apply eye drops and ointments almost constantly.
Jen suffered with dry eye for the next eight years, never realizing that it was caused by her SJS. She would apply eye drops every 15 minutes, and often woke in the middle of the night due to the pain. “My eyes ruled my life. I had to be sure that I had enough drops for the whole day every time I left the house, and I was spending SO much money on them.” Even with these challenges, Jen was grateful to even be alive.
A ruptured cornea and subsequent cornea transplant that refused to heal properly led to a referral for BostonSight PROSE treatment with Alan Kwok, OD. “PROSE treatment is one of the best things that could have happened to me. Every day I am more comfortable. I can see better, my life is easier; and I have a sense of peace knowing that my eyes are protected.”
Jen recently took a step that makes her feel even more “normal”. She packed a travel bag with a second set of PROSE accessories and supplies, so that she can just pick up and go for an evening or a weekend. Jen has reclaimed her life and can be spontaneous again – with the help of BostonSight PROSE.