Jackie's Story

At the age of 10, Jackie was diagnosed with toxic epidermal necrolysis (TENS), a severe form of Stevens-Johnson syndrome.

These rare disorders affect the skin and mucous membranes, causing the skin to blister and detach. The symptoms resemble those of a burn injury. The treatment approach is similar to the care plan developed for a patient with burn wounds.

Jackie was in the intensive care unit of a local children’s hospital before being transferred to Shriners Children’s Boston. Because the hospital specializes in burn care, clinicians applied their experience with burns to treat Jackie. “I do not remember much about being admitted to Shriners, as I was very sick at that time and heavily sedated,” Jackie said, noting that 97% of her skin was affected by TENS. She was an inpatient for three months before transitioning to outpatient care, which involved extensive physical therapy and occupational therapy.

Jackie recalls that while she knew how important the physical and occupational therapy was to her overall recovery, it was difficult at times. “Even though it was hard, the staff always tried to incorporate fun things into it, and found ways to bring out my competitive nature.”

Now an adult, Jackie has had time to reflect on that uncertain period in her life when she was so ill. “I remember when I was less sedated that the nurses seemed to know me so well. Even though I was intubated and sedated for over a month, the staff clearly had gotten to know me through my parents,” she said.

One person in particular had a lasting impact on Jackie – Shriners Children’s Boston Chief of Staff Robert L. Sheridan, M.D. “I have no doubt that without Dr. Sheridan I would not be where I am today. His level of expertise in burn care and how that is used to treat TENS ensured I had the best treatment. But it was also his compassionate bedside manner that helped my whole family through the experience,” Jackie noted.

Dr. Sheridan explained that children with very severe cases of TENS are likely to end up in a burn unit, “where the critical care and wound management expertise of our staff can be applied to the organ failures and wounds seen in children with severe TENS.”

Jackie and her family stayed in touch with Dr. Sheridan over the years. Jackie went on to graduate from nursing school, and her father sent Dr. Sheridan an email update with the subject line: “You saved a nurse’s life.” Dr. Sheridan then invited Jackie and her father back to Shriners Children’s Boston to spend some time with the staff who cared for her more than a decade earlier. After that reunion, Dr. Sheridan offered to serve as a career resource for Jackie. “Even beyond the care he gave me as a patient, he was genuinely interested in seeing me succeed in my career,” she said.

Now a nurse at Mass General Brigham, Jackie offered up a full circle Shriners Children’s Boston connection. Once a month, Jackie and her nursing colleagues attend staff meetings in the Shriners Children’s Boston auditorium.

“I remember Jackie and her family very well, and was happy to learn that she chose nursing as a career,” said Dr. Sheridan. “She earned a unique perspective through her illness and recovery that must serve her well as she now cares for and relates to her own patients.”

When she is not caring for patients, Jackie loves spending time in nature – hiking, going for walks and photographing what she encounters. Her favorite winter activity is skiing, where she enjoys the mountains.

“Going through a medical experience like I had can be very impactful on your life, and it can also feel very isolating. As SJS/TENS is a relatively rare disease, my advice to someone who has had it is to find support from others who have had it. Whether that is an online support group or making a connection through social media, I think finding connections with others who have had this illness can help you process what you have been through,” Jackie noted.

Jackie shared a message of gratitude for those who helped her through illness more than two decades ago. “I would just like to thank all of the amazing individuals involved in my care, from the nurses, doctors, physical and occupational therapists, and all other ancillary staff. Without them, I would not be where I am today, with the ability to become a nurse and potentially have an impact on someone else’s life.”