Learning About Stevens-Johnson Syndrome

What is Stevens-Johnson syndrome?

Stevens-Johnson syndrome is a rare but serious condition that causes a rash and sores on the body's mucous membranes, which are moist tissues that line the inside of the body.

The condition is most commonly caused by a reaction to a medicine. Other causes include infections. In some people the cause is unknown.

What are the symptoms?

Symptoms of Stevens-Johnson syndrome include:

  • Weeping sores on the mucous membranes of the mouth, nose, genitals, and eyes. When sores occur in the mouth, eating and drinking can be painful.
  • A skin rash with purplish red spots. The rash may be painful and peel off. It may happen on any part of the body but often begins on the face, neck, chin, and chest (trunk).

Sores may occur along with other early signs of illness. These include fever, sore throat, and redness or swelling of the eyes.

How is Stevens-Johnson syndrome treated?

Even mild Stevens-Johnson syndrome can get worse quickly and become serious, so it's treated in the hospital. Your doctor can help determine whether a medicine is the cause. If a medicine causes the condition, you will need to stop taking that medicine.

Treatment may include eating a soft diet and drinking fluids to prevent dehydration. You may receive fluids through a vein (intravenously, or IV) in the hospital. Your doctor may give you medicines for pain.

You may get treatment for mouth, eye, and skin sores. In some cases, skin grafts are needed. Some people may be treated in a burn unit.

Recovery from Stevens-Johnson syndrome may be slow. It may take weeks or months based on how bad the condition is.

Follow-up care is a key part of your treatment and safety. Be sure to make and go to all appointments, and call your doctor or nurse call line if you are having problems. It's also a good idea to know your test results and keep a list of the medicines you take.

Is it an emergency?

If you or someone in your care has chest pains, difficulty breathing, or severe bleeding, it could be a life-threatening emergency. Call 9-1-1 or the local emergency number immediately.
If you are concerned about a possible poisoning or exposure to a toxic substance, call Poison Control now at 1-800-567-8911.

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