What is acute disseminated encephalomyelitis?
Acute disseminated encephalomyelitis (ADEM) is a neurological disorder characterized by brief but widespread attacks of inflammation (swelling) in the brain and spinal cord that damages myelin. Myelin is the whitish protective coating over nerves that helps with electrical nerve signaling. ADEM often appears following a viral or bacterial infection and sometimes (rarely) following a vaccination. It is sometimes misdiagnosed as the first severe attack of multiple sclerosis, since the symptoms and appearance of damage to the white matter may be similar. ADEM may be an autoimmune condition, in which the body's immune system mistakenly identifies and attacks healthy cells and tissue. Symptoms include:
- Loss of vision in one or both eyes due to inflammation of the optic nerve
- Weakness that may be severe
- Difficulty coordinating intended (voluntary) movement such as walking
- Rapid onset of fever
- Some degree of impairment of consciousness, perhaps as severe as coma
ADEM can occur in people of any age, but it most often occurs in young children.
Treatment is targeted at suppressing the immune system and inflammation in the brain using anti-inflammatory drugs such as corticosteroids. Some individuals may need plasma exchange (plasmapheresis) or immunoglobulin therapy. Most people with ADEM being to recover within days after treatment, and many will recover completely within six months. In rare instances, ADEM can be fatal.
How can I or my loved one help improve care for people with acute disseminated encephalomyelitis?
Consider participating in a clinical trial so clinicians and scientists can learn more about ADEM and related disorders. Clinical research uses human volunteers to help researchers learn more about a disorder and perhaps find better ways to safely detect, treat, or prevent disease.
All types of volunteers are needed—those who are healthy or may have an illness or disease—of all different ages, sexes, races, and ethnicities to ensure that study results apply to as many people as possible, and that treatments will be safe and effective for everyone who will use them.
Where can I get more information about acute disseminated encephalomyelitis?
The following organizations and resources help people living with ADEM and their families, friends, and caregivers:
National Organization for Rare Disorders (NORD)
Phone: 203-744-0100 or 800-999-6673; 844-259-7178 Spanish