For Patients

Paying it Forward

Patient: Joe Zienowicz
Diagnosis: SJS
Sight restored: 1997

The dictionary defines the word “philanthropist” as “a person who seeks to promote the welfare of others, especially by the generous donation of money to good causes.” The origin of the word is from the late Latin/late Greek word “philanthropia” meaning “love for mankind". Synonyms include benefactor, patron, helper, and humanitarian.

These are appropriate words to describe Joseph Zienowicz (pictured below with Julie McCawley at SJS Care Week 2015), who recently made a significant donation to help fund Stevens Johnson Syndrome (SJS) Care Week 2015. A BFS patient since 1997, Joe has chosen BFS as his primary charity, providing annual donations for years. Through his generosity he has provided assistance to patients who otherwise might not have the means to receive the sight-restoring effects of BostonSight® PROSE treatment.

In June of 1996, Joe was newly married to his wife, Susan, with a great career and in the prime of his life. That was also about the time that Joe was stricken with Stevens Johnson syndrome (SJS), a severe adverse reaction to medication. For Joe, that medication was DayPro, used to reduce pain, swelling and stiffness of the joints. “My doctor gave it to me for my tennis elbow. Ten days later I woke up and my skin was peeling off,” remembers Joe.

Joe spent three long months in a burn unit at a Philadelphia hospital, eventually losing 90% of his skin. When he was able to return home, he was grateful to be alive, but his quality of life was deeply affected by the damage to his eyes.  In mild cases of SJS, the eyes can become irritated and dry; in severe cases, extensive tissue damage, scarring, and extreme light sensitivity can occur. In Joe’s case, the damage was severe. “I was living in darkness like a vampire for nearly two years. I even removed the light bulbs from the refrigerator.”

Online research into experts on SJS led Joe to discover C. Stephen Foster, MD, at Massachusetts Eye and Ear. Dr. Foster then referred Joe to Boston Foundation for Sight where it was determined that he was a perfect candidate for BostonSight PROSE treatment. He began the treatment process immediately and two weeks later went home, his visual function and quality of life restored.

“Within seven days I was back on my bike, two weeks later I was driving again, and within a month I was back to work,” recalls Joe. He also recalls the bill that arrived shortly after they returned home.  Until more recently, most insurance companies did not cover PROSE treatment, and Joe’s insurance claim had been denied as medically unnecessary. “It wasn’t a medical necessity that I see again?” Joe wondered. 

Today, Joe is retired, but is grateful that he and Susan had successful careers with wonderful organizations which allowed them to be able to afford to pay for his treatment out-of-pocket.   And he chooses to pay that gratitude forward.  “Without my eyesight, I don’t know where I would be. We try and do what we can for the foundation, because we know that not everyone is as fortunate as we are.”

Joe attended his first SJS Care Week in 2015, and he was struck by how many people from so many countries have been affected by this illness and have to travel such long distances to get help. “It was really nice to put a face behind the email communications from the SJS/TENS forum online boards and to catch up with old friends that I have met at BFS in years past. Talking to others with similar experiences is very helpful.  I look forward to SJS Care Week in 2016.”

Download a PDF of Joe's story here.