Dr. Karen Worthy Story

Stronger Than the Storm of SJS/TEN: A Nurse Educator’s Survival, Faith, and Renewal

Karen Worthy, Ph.D., MPH, RN, CNE, CNEcl

University of South Carolina, College of Nursing Professor

On January 25, 2020, Dr. Karen Worthy initially believed she was coming down with the flu. The familiar fever, cough, and muscle aches mirrored symptoms she had experienced the year before. But as the day wore on, her condition rapidly changed. New, alarming symptoms emerged—signals that this was not the flu at all, but something far more serious. She was facing 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 a clinic at the local pharmacy. I thought they would just give me medication for the flu, such as an antiviral medication, such as Tamiflu, a cough suppressant, and maybe a decongestant, and that things would be just fine,” said Dr. Worthy. “During my assessment, the nurse practitioner stated 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. An emergency was unfolding, and time could be the difference between life and death.”

Dr. Worthy was transported by ambulance to a local hospital in Columbia, SC, where her condition deteriorated rapidly. Her face was becoming more edematous, and her lips and skin began to blister. Due to the risk for airway closure, she was also facing the likelihood of intubation. Even 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? There was no definitive diagnosis.

“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, MD, 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. The diagnosis proved to be a crucial step in prescribing the proper treatment as quickly as possible.

Stevens-Johnson syndrome (SJS) was the correct diagnosis; however, SJS is on a continuum with the more severe, toxic epidermal necrolysis (TEN). They are no longer considered separate conditions but SJS/TEN. SJS/TEN is a severe skin reaction most often triggered by particular medications, including sulfur drugs, seizure medications, and non-steroidal anti-inflammatory drugs (NSAIDs) called oxicams. In many cases, the exact cause is never definitively determined as in Dr. Worthy’s case.  It could have been something as simple as an over-the-counter pain reliever or fever reducer medication she had taken just two days before her hospitalization.

SJS/TEN is a rare disease, affecting 1 to 2 per million people each year, with SJS being more common than TEN. When more than 30% of the total body surface area (TBSA) is affected, the patient is on the more severe end of the SJS/TEN continuum, with a 25-35% mortality rate. This condition not only ravages the epithelial tissues of the body but leaves the patient susceptible to infection, multi-organ system failure, and other life-threatening complications. For this reason, it is imperative that individuals affected by SJS/TEN are treated at a multi-disciplinary burn center with the requisite experience to treat this complex condition.

Immediately after the diagnosis of SJS, on January 26, 2020, Dr. Worthy was transferred to the Joseph M. Still Burn Center at Doctors Hospital in Augusta, GA, where in the past year alone, more than 100 cases of SJS/TEN were treated. Dr. Worthy was where she needed to be to receive the necessary treatment to save her life.

Dr. Worthy’s daughter, Ja’Pel, recalls, “Dr. Mullins was the first person I talked to when I arrived at the Burn Center. 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, that 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 offers 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 me 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 until I need to be close by.  Living at the Chavis House made it so easy for me to just walk to the hospital if needed. It 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 in several areas of my body. I had to have two skin graft surgeries. My nails detached and 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.

The toll SJS/TEN took on her was extensive. Her eyesight deteriorated. 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. 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 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.  It’s all a blessing; I am blessed! ”said Dr. Worthy.

“My mom is a real trooper,” said Ja’Pel. “Once she was extubated, we actually got her out of bed that same day. She was very motivated. Because of her nursing background, knowledge, and skills, she knew the importance of ambulation as foundational for beginning her recovery process.”

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. She states, “This was the process I had to go through, and nothing could stop or alter that process. 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.  I do not take credit for my progress—I give all the glory to My God Almighty.”

Five years seems like ages ago now. 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 my health and the life I lead, I often hear people say, ‘Well, you must have asked God a million times why you?’ Never. Not once did I ever ask God why me. I asked Him, ‘Why not me?” I know everything happens for a reason, and this challenge only strengthened my faith in God as I remain thankful for all my many blessings.

I am grateful to have survived SJS/TEN, and I am a stronger, more purpose-driven Karen because of it.  Afterall, “I’m a NURSE! What’s your superpower?”

Helpful Links

• Learn more about the Burn Foundation of America.

• Read more about Stevens-Johnson syndrome and TEN.

• Explore more ways BRCA supports patients and their families.