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Neuromuscular and nervous system

Acute disseminated encephalomyelitis (ADEM)

Acute disseminated encephalomyelitis is a sudden, usually one-time burst of inflammation and demyelination across the brain and spinal cord. It's understood as an immune reaction, often triggered after a viral infection or, rarely, a vaccination, in which the immune system attacks myelin, the insulating coating around nerve fibers, in the central nervous system. It is more common in children and is most often monophasic, a single event rather than a recurring illness, though relapsing forms have been reported and can be hard to distinguish from multiple sclerosis.

Research describes ADEM as a rare condition, with one widely cited estimate placing overall incidence around 0.4 per 100,000 people per year and no particular gender, age group, or region disproportionately affected. Outcomes in children are generally favorable, though cognitive effects can persist even when other symptoms resolve.

Common signs

A fairly rapid onset of confusion or altered consciousness (encephalopathy) along with fever, headache, and multiple neurological problems such as weakness, vision changes, unsteadiness, and sometimes seizures.

This is a plain-language summary for orientation, not a diagnosis. Mechanisms are described as current understanding, not settled fact. Work with your own clinician for your care.

Questions people ask

What causes ADEM?+
ADEM is understood as an immune reaction that is often triggered after a viral infection, or rarely after a vaccination, in which the immune system attacks myelin, the insulating coating around nerve fibers, in the central nervous system. It's a rare condition, with one widely cited estimate placing overall incidence around 0.4 per 100,000 people per year, and research doesn't point to any particular gender, age group, or region as disproportionately affected.
What are the symptoms of ADEM?+
ADEM tends to come on fairly rapidly, with confusion or altered consciousness alongside fever, headache, and multiple neurological problems such as weakness, vision changes, unsteadiness, and sometimes seizures.
Does ADEM come back, or is it a one-time illness?+
ADEM is most often monophasic, meaning it happens once rather than as a recurring illness. Relapsing forms have been reported though, and when they occur they can be hard to distinguish from multiple sclerosis. Outcomes in children are generally favorable, even though cognitive effects can persist after other symptoms resolve. If there's a concern about repeat episodes, that's a conversation to have directly with a neurologist.

In a doctor’s words

“Sophia was a real trooper. She needed to relearn nearly everything that she had done previously. She at times would get frustrated, but the rehabilitation team and her family kept her going and progressing in the right direction. Over these months, Sophia has made exceptional progress and has a wonderful prognosis with full recovery.”

Charles Pelshaw, MD, physical medicine and rehabilitation specialist, Children's Hospital of Michigan
Read more at Children's Hospital of Michigan / DMC (Sophia's Story) ↗

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Articles from Daniela

Daniela Hess, MSEd, is a co-founder of Great Energy and an Autoimmune Educator and Functional Wellness Consultant who lives and thrives with Hashimoto’s. She is not a licensed medical provider.

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