Life After SJS/TEN: What Recovery Really Looks Like
- Aziz Ghafoor & Kimia Ameri
- May 4
- 3 min read
Stevens-Johnson Syndrome (SJS) and Toxic Epidermal Necrolysis (TEN) are rare but severe conditions that affect many parts of the body such as the skin, eyes, and internal organs. While the focus is often on the critical, life-threatening stage in the hospital, it’s important to also talk about what happens after someone survives. Recovery from SJS/TEN can be long, unpredictable, and different for everyone.
Let’s walk through what we know about healing after SJS/TEN—from hospital discharge to long-term mental and physical health.
The Road from the Hospital to Home
Patients with SJS/TEN are often treated in burn centers because their skin damage is similar to burn injuries. But what happens when they leave the hospital?
A study by Richard et al. looked at how burn units treat SJS/TEN and found that treatment varies a lot depending on the hospital and doctors involved. There are no strict, one-size-fits-all rules for recovery, and this means that some patients may not get consistent follow-up care or support after they leave.
Discharge from the hospital doesn’t mean someone is fully healed. It just means their most dangerous symptoms—like skin blisters/burns and infection—are under control. The healing process may continue at home and can take months or even years.
Physical Recovery: More Than Just Skin-Deep
After surviving SJS/TEN, patients often live with visible scars and long-term damage. One common issue is chronic eye disease. According to researchers, many people develop dry eyes, scarring inside the eyelids, and even blindness without proper eye care. Some patients have surgery to help protect the eyes early on, but results vary.
Other physical effects can include:
● Skin that blisters or burns easily
● Painful joints and fatigue
● Trouble eating due to mouth or throat damage
Even when the outer skin looks healed, the inside of the body may still be dealing with inflammation and immune responses. In fact, studies show that people who’ve recovered from SJS/TEN still have strong immune system “memories” of the event—certain immune signals like IFN-γ (a protein involved in inflammation) stay elevated for years.
Mental Health After SJS/TEN
Healing isn’t just physical—it’s emotional too. A survey of SJS/TEN survivors, conducted by DeNiro et al., found that many people experience psychological trauma long after they leave the hospital.
Some of the most common issues include:
● Anxiety and depression
● Post-traumatic stress disorder (PTSD)
● Fear of using medications again
Many survivors feel isolated or misunderstood because of how rare the condition is. Talking to mental health professionals, joining support groups, and staying connected with doctors can make a big difference.
Why Consistent Follow-Up Matters
One big takeaway from all the studies is that there’s no universal plan for helping people recover from SJS/TEN. An article by Kumar et al. called on doctors to “look beyond the guidelines” and really listen to each patient’s needs after the hospital stay. This includes:
● Creating personalized follow-up plans
● Referring patients to specialists like eye doctors or mental health professionals
● Educating patients and families about what symptoms to watch for
Because the effects of SJS/TEN can pop up months or years later, it’s important for survivors to check in regularly with their healthcare team—even if they feel okay.
Moving Forward After SJS/TEN
SJS/TEN recovery is a long journey, and no two people experience it the same way. While the first goal is surviving the initial illness, the second—and just as important—goal is helping survivors live healthy, full lives afterward.
Whether it's managing vision problems, dealing with scars, or getting support for mental health, everyone deserves care that treats the whole person, not just their skin.
References
Richard EB, Hamer D, Musso MW, Short T, O’Neal Jr HR. Variability in management of patients with SJS/TEN: a survey of burn unit directors. Journal of Burn Care & Research. 2018 Jun 13;39(4):585-92.
De Rojas MV, Dart JK, Saw VP. The natural history of Stevens–Johnson syndrome: patterns of chronic ocular disease and the role of systemic immunosuppressive therapy. British journal of ophthalmology. 2007 Aug 1;91(8):1048-53.
Fu M, Gao Y, Pan Y, Li W, Liao W, Wang G, Li C, Li C, Gao T, Liu Y. Recovered patients with Stevens–Johson syndrome and toxic epidermal necrolysis maintain long-lived IFN-γ and sFasL memory response.
DeNiro KL, Honari S, Hippe DS, Dai A, Pham TN, Caceres M, Mandell SP, Duong PQ, McMullen KA, Gibran NS. Physical and Psychological Recovery Following Toxic Epidermal Necrolysis: A Patient Survey. Journal of Burn Care & Research. 2021 Nov 1;42(6):1227-31.
Kumar R, Das A, Das S. Management of Stevens-Johnson syndrome-toxic epidermal necrolysis: looking beyond guidelines!. Indian journal of dermatology. 2018 Mar 1;63(2):117-24.
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