A Nurse Educator’s Journey to a New Normal: Surviving SJS/TEN

May 17, 2021

On January 25, 2020, Karen Worthy, Ph.D., MPH, RN, CNE, thought she had the flu. Fever, cough, and muscle aches were all symptoms she experienced when she had the flu the previous year, except this time was very different. As the day progressed, she began presenting other worrying symptoms that indicated not only a possible illness but a medical emergency.

“I got really sick at work; I just did not feel well. The following day, I felt worse, so I decided to go to the clinic at a local pharmacy. I thought they would just give me something for the flu like an antiviral medication, a cough suppressant, and maybe a decongestant and that things would be just fine,” said Dr. Worthy. “During my assessment, the nurse practitioner said I had a fever of 104°F, and she was looking very concerned. And then she said that my face was beginning to swell right before her eyes.”

Dr. Worthy was transported by ambulance to a local hospital in Columbia, SC, where her condition deteriorated rapidly. Her face was becoming more swollen, and her lips and skin began to blister. Due to the risk for airway closure, she was also facing the likelihood of intubation. Yet, as they worked on emergency treatment options, there was one thing Dr. Worthy and her healthcare team had yet to figure out: What exactly were they treating?

“The doctors did not immediately recognize what medical condition I had developed but knew it was atypical and life-threatening. They quickly formed an interdisciplinary team including specialists from Intensive Care, Emergency Medicine, Dermatology, and Internal Medicine to care for me and my rare condition. My daughter, Dr. Ja’Pel Sumpter, MPH, was there as well; they included her in their discussions and treatment plans. Ultimately, it was the dermatologist who diagnosed my condition as Stevens-Johnson syndrome,” Dr. Worthy said.

Stevens-Johnson syndrome (SJS) and toxic epidermal necrolysis (TEN) are both degenerative skin disorders characterized by severe inflammation, redness, and skin shedding or sloughing. These disease processes are similar, normally only differentiating in the percentage of the total body surface area (TBSA) affected with SJS involving less than 10% and TEN more than 30%. However, there is some cross over between 10-30% where it can be diagnosed as either SJS or TEN. Both usually occur as a reaction to a “trigger”, the most common triggers being certain medications, such as sulfur drugs or seizure medications. However, in Karen’s case, neither of those medications was the culprit. They can only guess at the cause now, but it could have been something as simple as a pain reliever and fever reducer she had taken just two days prior to her hospitalization. While this may or may not have been Dr. Worthy’s trigger, every patient is different and all experiences with SJS/TEN are unique with variations in severity, complexity, and recovery.

These skin disorders not only ravage the epithelial tissues of the body but leave the patient susceptible to infection, multi-organ system failure, and other severe complications. For this reason, it is imperative individuals affected by SJS or TEN are treated at a multi-disciplinary burn center that is experienced at healing these disorders. Which is why, by January 26, 2020, Karen had been transferred to the Joseph M. Still Burn Center at Doctors Hospital in Augusta, GA, where more than 100 cases are treated every year.

“[Medical Director Dr. Fred Mullins] was the first person I talked to when I arrived at the Burn Center,” said Dr. Worthy’s daughter, Ja-Pel, a gynecologist. “He brought me into a room and told me the prognosis and exactly what to expect, and an estimated timeframe of how long she would be in the hospital. He was absolutely amazing, and any time I had any questions, he was always more than willing to discuss any questions I had. You could tell from his humble disposition and compassion that he was made for this job. There aren’t many people who can build such a rapport the way he could with his patients and their families. My mother always said, ‘In life, but especially in healthcare, people don’t care how much you know until they know how much you care.’ He definitely got me through the initial shock of everything.”

Living in North Carolina at the time, Ja’Pel had never been to Augusta and had nothing with her but an overnight bag. She was alone in a strange city. After getting her mother admitted, by the time she left the Burn Center to look for a place to stay, it was 3:00 in the morning. That’s when the Burn Foundation of America intervened and offered Ja’Pel a room in the Chavis House, which provides free lodging and daily meals for family members and loved ones of patients in the Burn Center during the extent of their stay and recovery period.

“The Chavis House was an absolutely amazing resource to have for people like myself who have no local family and are there alone. I had never been to Augusta, nor did I know anyone there, but I quickly started building relationships with the other family members. We stayed in the house together, prayed together, and we would check on each other daily to make sure everyone was okay. We became each other’s support system. So much was going on with my mother’s care that I needed to be close by. The Chavis House was literally across the street from the hospital, so if anything happened, I could immediately return to the hospital,” said Ja’Pel. “It was a very trying time, but it also rebuilt my faith in humanity.”

Dr. Worthy and Ja’Pel were in Augusta for an entire month. During that time, Dr. Worthy experienced extensive physical and medical changes. Her outward appearance and her overall health changed as SJS/TEN ran its course.

“SJS/TEN causes the body to go through a complete regeneration, and you can’t stop that process. My skin sloughed off on several areas of my body. I had to have two skin graft surgeries. My nails fell off. I became legally blind in my right eye. I was intubated and on the ventilator for approximately two weeks to protect my airway,” she said.

In addition, her shoulder-length hair had to be shaved off in the treatment process. Her skin both looked and felt different with a new sensitivity to direct sunlight. And her eyesight deteriorated. But none of that mattered to Dr. Worthy. When she looked in the mirror, she saw a different Karen on the outside, but she knew what made her who she was and what she stood for remained the same. She was grateful and appreciative of every day.

“I know that people love their hair, and I loved my hair at the time, but it’s okay because your hair will grow back…your skin will regenerate…your vision will get better. And, as I shared with many people about those features, it will all get better over time or, perhaps, it will not. If my hair does not grow back, I’ll wear a hair system or a wig. If my vision does not improve, I’ll wear corrective lenses. If my skin doesn’t regenerate properly, there are many dermatological interventions I can explore. I know who I am, and I know the journey I have traveled. These physical aesthetics are not important to me. My family and I will move forward from today. Every day is like the first day of the rest of my life,” said Dr. Worthy.

Although SJS/TEN resulted in many changes to Dr. Worthy’s body, some things remained the same. These are the essence of who she is and why she is loved and respected by many. No matter what the trials, Dr. Worthy is steadfast in her faith in God, her love of family and friends, her positive spirit, and her nurse’s intuition.

“This was the process I had to go through, and nothing could stop or alter that process,” she said, “But through God’s unwavering grace, the prayers and love of my family and friends, and the skill and knowledge of my medical team, today my skin has regenerated, my vision is 20/20 bilaterally without corrective lenses, and I walk over a mile a day.”

Last year seems like ages ago now that Dr. Worthy has resumed her role as the Assistant Dean of Undergraduate Studies in the College of Nursing at the University of South Carolina. As a nurse and a professor educating future nurses, she is in the right place and profession. She is so proud and thankful for all the nurses who were and still are a part of her SJS/TEN journey.

“I would not have chosen a different profession. Nursing is embedded in the core of my heart and soul. I am passionate about nursing, education, and my students as we are educating future nurse leaders, stewards of the community, and future researchers. We are phenomenal providers and a vital part of the interdisciplinary healthcare team. My family and I could not have asked for a better experience during such an unexpected, vulnerable time. As nurses, their compassionate prayers along with genuine acts of kindness and caring (i.e., therapeutic touch, smiles, kind words, etc.) enhanced a positive outcome. We are the heart of healthcare!”

Dr. Worthy further reflects, “Before developing SJS/TEN, I had never been admitted in the hospital, never really been sick, no diagnosis of diabetes or hypertension, or any other comorbidities. I ran two miles every day. I didn’t have any health issues. To this day, my providers still do not know what caused my condition.”

Given her health and the life she led, Dr. Worthy often heard people say, “‘Well, you must have asked God a million times why you?’ Never,” she said. “Not once did I ever ask God why me. I asked Him, ‘Why not me?’”