Viktoria Cupay is no stranger to raising awareness about underserved and invisible illnesses. In 2016, two years after she began searching for a diagnosis, Viktoria found out that she was living with both lupus and lupus nephritis. She has chronicled her experiences on social media, sharing her story via her TikTok and Instagram accounts. But outside of lupus, Viktoria also aims to raise awareness of another rare condition she faced: Stevens-Johnson Syndrome (SJS). Given the severity of her SJS, Viktoria’s condition was actually considered to be Toxic Epidermal Necrolysis (TEN).

Since then, Viktoria has healed from her Stevens-Johnson syndrome – although she still experiences complications from both that and lupus. Yet she continues to raise awareness with a goal of not only educating others, but providing support to those in need.

Recently, Viktoria and I sat down to discuss her experiences with lupus and Stevens-Johnson syndrome, go over what SJS/TEN is, and share advice for people who might be newly diagnosed.

What is Stevens-Johnson Syndrome (SJS)? 

Stevens-Johsnon syndrome is a rare, serious, and unpredictable skin disorder that affects the mucous membranes, causing painful blistering and peeling. Typically, SJS occurs as a react to a medication or infection, and may begin up to two weeks after the trigger. In Viktoria’s case, she explains that she had:

an extreme allergic reaction to a medication.

Stevens-Johnson syndrome causes blistering and peeling over 10% of the body; when over 30% is covered, the condition is considered Toxic Epidermal Necrolysis (TEN). In Viktoria’s case, over 50% of her body was considered “burnt,” signifying her condition as TEN. Blisters from SJS may occur inside of the body as well as outside, which Viktoria explains happened in her case. These blisters can make it difficult to eat, swallow, use the restroom, or perform other daily functions.

SJS is considered to be a medical emergency; those experiencing this condition should be hospitalized. Symptoms and characteristics can, but do not always, include:

• Flu-like symptoms
• A painful red and purple rash that spreads and eventually blisters
• Skin sloughing/shedding
• Painful urination
• Burning eyes
• Sore mouth and throat
• Corneal scarring
• Difficulty breathing
• Cough
• Skin pain
• Fever
• Loss of hair and nails

Viktoria’s Story

In 2016, Viktoria was diagnosed with lupus, an autoimmune disease which can affect many organs. So when she started having a fever in 2019, she initially believed that she was just having a lupus flare. But she became more concerned when the fever lasted for multiple days. Eventually, Viktoria decided to go to the emergency room. Luckily, this ended up being a good move, as Viktoria started experiencing SJS symptoms the following day. She shares:

The day after I was admitted to the hospital, my skin started to peel off and blister. The first hospital my mom and I went to didn’t really know what was happening. Doctors sent pictures to a dermatologist, who said that I had Stevens-Johnson syndrome. At that point, I was in so much pain already. I had to be transferred to another hospital also since the first hospital did not have the resources to treat me.

Viktoria spent the next 240 days in the hospital, including being in a medically-induced coma for one month. During her time in the hospital, she shares:

I had a lot of close calls, and doctors had to revive me more than once. Waking up from the coma was also very confusing. I had no idea what was going on.

The complications from her SJS/TEN also presented some difficulties. Viktoria had significant weight loss and hair loss. Her and her mother decided to shave her head just so Viktoria could start over fresh. Although it was extremely difficult at the time, Viktoria says that she’s happy that she did it – especially because her hair is back to being so nice, long, and healthy.

Viktoria also had to relearn how to walk, speak, and eat. She shares that:

The entire process was definitely long and hard. I went through a lot of complications and had to depend on others for activities just to get through my daily life. It was hard considering that I worked as a nursing aidefor an assisted living home before, but suddenly the situation flipped and I was the one needing help.

Join us in Part 2 of our interview, where we discuss the recovery process, advice, and why Viktoria feels it is so important to continue raising SJS/TEN and lupus awareness.