Living with Acute disseminated encephalomyelitis
A brief but intense attack of swelling in the brain and spinal cord, often following a viral infection.
Understanding Acute disseminated encephalomyelitis
The inflammation may damage myelin, the layer of insulation around nerves. ADEM often follows a viral infection, or less often, the measles, mumps, or rubella (MMR) vaccine. It can happen at any time in life, and symptoms usually appear quickly.
Signs & symptoms
Symptoms vary from person to person. GARD lists these among the most common:
- Fever
- Headache
- Extreme sleepiness
- Trouble with balance and coordination (ataxia)
- Irritability
- Nausea and vomiting
Not everyone has every symptom. GARD's list comes from the Human Phenotype Ontology.
Diagnosis
- 1Talk with your doctor
Share the symptoms you've noticed, when they started and your family health history. Notes and photos can help.
- 2See a specialist
Specialists who may be involved include brain and nervous system specialists, eye disease specialists and seizure and epilepsy specialists.
- 3Ask which tests can help
Your care team will decide which exams and tests can confirm the diagnosis.
- 4Connect with expert centers
Autoimmune Association, Siegel Rare Neuroimmune Association and Autoimmune Encephalitis Alliance may keep lists of experts for this condition.
Care & treatment
- Care team
- Brain and nervous system specialists (neurologists); Eye disease specialists (ophthalmologists); Seizure and epilepsy specialists (epileptologist)
- Expert care
- Expert lists: Autoimmune Association, Siegel Rare Neuroimmune Association, Autoimmune Encephalitis Alliance
- Treatment
- GARD doesn't list specific treatments for this condition. Your care team will tailor care to your symptoms.
- Research
- Clinical trials and observational studies may be options. See the research section below.
General information, not medical advice. Your care team makes the decisions.
Everyday life
Living with a rare condition is easier with support.
- Connect with Autoimmune Association and other patient organizations
- Keep notes on symptoms, changes and questions for appointments
- Ask about patient registries that help research
- Look into financial aid and travel resources for care visits
Quick facts
GARD says ADEM often follows a viral infection or, less often, vaccination for measles, mumps, or rubella. It doesn't list a gene cause.
Also known as: acute disseminated encephalitis; adem; adem - acute disseminated encephalomyelitis; post-infectious encephalomyelitis
Patient organizations
- Autoimmune AssociationAcute disseminated encephalomyelitis · United States
- Siegel Rare Neuroimmune AssociationAcute disseminated encephalomyelitis · United States
- Autoimmune Encephalitis AllianceAcute disseminated encephalomyelitis · United States
- Global Autoimmune InstituteAcute disseminated encephalomyelitis · United States
- National Multiple Sclerosis SocietyAcute disseminated encephalomyelitis · United States
- United Leukodystrophy FoundationAcute disseminated encephalomyelitis · United States
- Ben's FriendsAcute disseminated encephalomyelitis · United States
- Encephalitis411Acute disseminated encephalomyelitis · United States
You are more than your diagnosis
Perspectives from people navigating life with Acute disseminated encephalomyelitis.
Explore research for Acute disseminated encephalomyelitis
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