What is the life expectancy of someone with Stevens Johnson Syndrome?

Life expectancy of people with Stevens Johnson Syndrome and recent progresses and researches in Stevens Johnson Syndrome


Stevens-Johnson Syndrome (SJS) is a rare and severe disorder that affects the skin and mucous membranes. It is often triggered by an adverse reaction to certain medications or infections. SJS is characterized by a painful rash that quickly spreads and causes the top layer of the skin to detach from the lower layers. This condition can be life-threatening and requires immediate medical attention.



The prognosis and life expectancy of individuals with Stevens-Johnson Syndrome can vary depending on several factors, including the severity of the condition, the underlying cause, and the promptness of medical intervention. It is important to note that SJS is a medical emergency, and early recognition and treatment significantly improve the chances of survival.



The acute phase of Stevens-Johnson Syndrome typically lasts for a few weeks. During this period, patients may experience intense pain, blistering, and shedding of the affected skin. The condition requires specialized care in a burn unit or intensive care setting. Treatment involves the immediate discontinuation of the causative medication, if applicable, and meticulous wound care to prevent infection. Intravenous fluids, pain management, and supportive measures are also provided to stabilize the patient.



Complications arising from SJS can be severe and life-threatening. One such complication is sepsis, a potentially fatal infection that can occur due to the compromised skin barrier. Sepsis requires aggressive treatment with antibiotics and other supportive measures. Another complication is respiratory involvement, which can lead to difficulty breathing and necessitate the use of a ventilator. Additionally, ocular complications may arise, such as conjunctivitis, corneal ulcers, or even blindness. These complications require specialized ophthalmological care.



Long-term prognosis for individuals who survive the acute phase of SJS depends on the extent of skin and organ involvement. Some patients may experience scarring and changes in skin pigmentation that can persist for months or years. The severity of these long-term effects varies among individuals. In cases where the mucous membranes are extensively affected, long-term complications can include difficulty swallowing, chronic dry eyes, and genital or urinary complications.



It is important to note that early diagnosis and prompt treatment significantly improve the prognosis for individuals with Stevens-Johnson Syndrome. Timely medical intervention can help minimize the extent of skin and organ involvement, reduce the risk of complications, and improve overall outcomes.



In conclusion, Stevens-Johnson Syndrome is a severe and potentially life-threatening condition. The prognosis and life expectancy of individuals with SJS depend on various factors, including the severity of the condition, the underlying cause, and the promptness of medical intervention. Surviving the acute phase of SJS is crucial, and long-term complications can vary among individuals. Early diagnosis, immediate discontinuation of causative medications, and specialized medical care significantly improve the chances of survival and minimize long-term effects.


by Diseasemaps

I don't know but I believe with the right treatment someone with sjs can live a full normal life

2/24/17 by Sophie 1150

It simply depends on the case. Some are much more severe than others & still live a long life; some progress quickly, some slowly, some take a quick turn. I personally was in an induced come & my family called in to say their goodbyes as it was thought I wouldn't survive the night. Here I am, 6 years later. Many SJS/TEN patients come out of the event rather unscathed & there are many others who end up dealing with other significant issues. SJS itself is an autoimmune disease, not simply an allergy in itself. As such, AI's often beget more AI's. A big issue with this in SJS-land is that the patients associate their later symptoms with their SJS incident. Although SJS may have triggered more disease(s) into action, it is not specifically the cause of those symptoms. Patients often get turned away by their SJS doctors because these new symptoms don't fit the profile --when they should be referred to other specialists, such as a rheumatologist for bone & joint pain, for example.

12/31/17 by Christine 400

I had severe SJS in 1966 as an 11 year old child. Little was known about it at the time and I the doctors treated me with the new drug cortiszone. I spent 5 weeks in hospital in isolation. It was a slow journey to total recovery, but here I am 54 years later, having lead a full and normal life with two wonderful daughters and 3 amazing grandchildren - proof that life expectancy is good

1/17/20 by Pauline 100
Translated from spanish Improve translation

According to the case, but normally good , but fighting everyday

10/4/17 by Yolika. Translated
Translated from spanish Improve translation

If the disease is attended to in time and correctly, it is sure that the person is saved and the recovery, although it is difficult and long, can provide nearly complete. It all depends on you

10/16/17 by Karen. Translated

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