Raising Stevens-Johnson Syndrome Awareness: Viktoria’s Story (Pt. 2)

Don’t forget to read Part 1 of our interview, where we discuss what Stevens-Johnson syndrome (SJS) and Toxic Epidermal Necrolysis (TEN) are, and learn more about how Viktoria ended up hospitalized. Today, we’re going to discuss the recovery process, as well as why Viktoria turned to social media to help raise awareness.

Recovering from Stevens-Johnson Syndrome

Throughout Viktoria’s recovery process, she was in and out of the hospital for a while. She was transferred to a total of eight different hospital facilities, and her care spanned from the ICU to physical rehabilitation, where she relearned how to climb stairs. She shares:

It was hard to accept, especially at the age of 23, to have to relearn how to do all of these things all over again. I just remember being in so much pain, and it was difficult physically and emotionally.

In February 2020, Viktoria was finally discharged from the hospital. She explains that she is very thankful that the discharge occurred before the COVID-19 lockdown:

My family and then-fiancé spent a lot of time in the hospital with me. When the lockdown happened, visitors were no longer allowed, so I was thankful to be home because it would have been so difficult to get through this without having anyone.

But even at home, the recovery process was not always easy. Viktoria began vomiting anywhere from one to five times a day. Her symptoms got worse and worse until she was rushed back into the hospital in May 2020, unable to keep any food or fluids down. A scan showed that part of her bowel had stopped working due to the complications of SJS/TEN. So just one month later in June, Viktoria underwent her first surgery to attempt to fix her bowel problems. At the time, she also had a trach to help her breathe and a G-tube for nutritional support. It was scary to manage, especially as she was unable to have any family members physically in the hospital.

Undergoing Surgery

The first surgery worked and Viktoria was soon able to eat without vomiting. She explains that the first time she ate, she waited anxiously for hours before realizing that she was doing well! Eventually, she was discharged in July 2020.

Still, Viktoria had to undergo two more surgeries in 2020. She shares:

I was nutrient-deficient, so the holes in my body wouldn’t close on their own. So I had one surgery to close my G-tube and the other to close my trach.

Viktoria credits this point as the real start of her recovery: the point where she was still using a wheelchair and walker, but when she could begin eating, walking, or using the bathroom without help. She is also so thankful to have the support system that she has, who helped her get through the entire process, saying:

I have a great support system and I owe my recovery to them. My mom would bring me to doctor appointments, and my then-fiancé would help me in different ways. I also have my siblings, my extended family, my grandparents, and my husband’s family, who have all been so helpful.

Since 2019, Viktoria has continued recovering and doing everything that she can to raise awareness. Although she must monitor her lupus, she feels that she is doing well at managing her condition right now, and is very thankful for her quality doctors.

She has also started the next chapter of her life, marrying her husband on August 19, 2022.

@justviktoria03

Some stories have a happy ending. Through sickness and in health with you.

♬ glimpse of us x up married life – sam

Raising Awareness of SJS, TEN, and Lupus on Social Media

At first, Viktoria really only spoke with her friends and family about her experience with lupus and Stevens-Johnson syndrome/TEN. However, at one point, her friend encouraged her to create a TikTok account to share her story with the world. She explains:

I was very hesitant at first and honestly didn’t think anyone would be interested in my story. But I made a spur of the moment decision in March 2021, created my first TikTok, and it blew up. I kept creating videos and people started having questions, wanting to know more about SJS, lupus, and being in a coma. So I thought that TikTok might be a great platform to discuss my experiences and to help teach others.

On her TikTok account, Viktoria talks about lupus, what it was like to recover from a coma, how to advocate for herself, and more. She often answers viewers’ questions and engages with others to raise awareness. TikTok has not only helped introduce her to a community of lupus warriors, but has given her the opportunity to inspire and help others. In the future, she hopes to continue creating these inspiring videos and forming even stronger community bonds.

Final Advice

Outside of her TikTok channel, Viktoria still hopes to support and advocate for those in her community. She participates in the Lupus Walk in Illinois and has shared her story in writing. She also tells people:

Advocate for yourself. Read research on trusted websites and make sure where you’re doing your research is reputable. There are organizations out there who can help you and who can provide support. Your diagnosis will be misunderstood most of the time by people who don’t have it, and that’s why raising awareness is important. It’s okay that people won’t understand you. And if you need to talk, you can reach out to me. I feel so happy and honored when people DM me because they’re choosing to trust me. It’s hard, but keep going and you’ll find the light at the end of the tunnel.

Jessica Lynn

Jessica Lynn

Jessica Lynn has an educational background in writing and marketing. She firmly believes in the power of writing in amplifying voices, and looks forward to doing so for the rare disease community.

Share this post

Share on facebook
Share on twitter
Share on linkedin
Share on pinterest
Share on print
Share on email