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Don’t fight Acute disseminated encephalomyelitis alone.
Find your community on the free RareGuru App.Acute disseminated encephalomyelitis (ADEM) is a neurological condition characterized by a brief but intense attack of inflammation in the brain and spinal cord. This may lead to damage of the layer of insulation around the nerves (myelin) within affected areas. ADEM often follows viral infection, or less often, vaccinations for measles, mumps, or rubella (MMR). Symptoms usually appear rapidly, beginning with fever, fatigue, headache, nausea and vomiting. Treatment for ADEM is targeted at suppressing inflammation in the brain using anti-inflammatory drugs. Most people begin to recover within days, with total or near-total recovery within a few months. Some people may have lifelong neurological impairments, and very rarely, severe cases can be fatal.
Source: GARD Last updated on 05-01-20
The symptoms of ADEM appear quickly, beginning with fever, fatigue, headache, nausea and vomiting, and in severe cases, seizures and coma. Damage to white matter (brain tissue that takes its name from the white color of myelin) may also occur, leading to neurological symptoms such as visual loss, muscle weakness, and difficulty coordinating voluntary muscle movements (such as those used in walking).
ADEM can be misdiagnosed as a severe first attack of multiple sclerosis (MS), since some of the symptoms of the two disorders are similar. However, ADEM usually has symptoms of encephalitis (such as fever or coma), which are usually not present in MS. In addition, in most cases, ADEM occurs only once, while people with MS have further, repeated attacks of inflammation in their brains and spinal cords.
Last updated on 05-01-20
The cause of ADEM is not clear. It is thought to be an autoimmune condition in which the body’s immune system mistakenly attacks it's own cells and tissues, resulting in inflammation. It typically develops after a viral or bacterial infection, or less often, after vaccination (immunization). ADEM may occur due to an inflammatory response that is first provoked by the infection or vaccine.
Most cases of ADEM occur about 7 to 14 days after an infection, or up to three months following a vaccination. The most commonly associated infectious agents include cytomegalovirus (CMV), Epstein-Barr virus, herpes simplex virus, human herpes-virus-6, influenza virus, hepatitis A, HIV, and mycoplasma pneumonia. Associated vaccines have included rabies, measles, pertussis, tetanus, influenza, hepatitis B, diphtheria, rubella, pneumococcus, varicella, smallpox, human papillomavirus and poliomyelitis.
In many cases of ADEM, no preceding infection or "trigger" is identified. Susceptibility to having ADEM may exist and is likely due to multiple factors, including complex interactions between genetics and exposure to infections and other environmental factors.
Last updated on 05-01-20
ADEM is not an inherited condition, and we are not aware of any familial cases (reports of ADEM occurring in more than one family member). However, some people may be more susceptible to having ADEM. Susceptibility is likely due to multiple factors, including complex interactions between genetics, exposure to infections, immunization exposure, and other environmental factors. Because there are no specific genes known to increase a person's risk to have ADEM, there is no "susceptibility" test for children who may be at risk, or for parents concerned that current or future children may be at risk. You can read about what is known about possible causes of ADEM here.
Last updated on 05-01-20
The long-term outlook (prognosis) for people with ADEM varies. Most people begin to recover within days, with total or near-total recovery within a few months. Rarely, there may be some lifelong neurological impairment. Very rarely, ADEM can be fatal.
ADEM may recur in some cases, and if it does, it is usually within months of the initial episode. Recurrences are typically treated by restarting corticosteroids. A small proportion of people initially diagnosed with ADEM will go on to develop multiple sclerosis (MS). Unfortunately, there is no way to predict who will develop MS. The risk for MS appears to be highest in children with ADEM who had no fever, triggering infection, or recent immunization.
Last updated on 05-01-20
Early treatment one of the most important factors to determine the prognosis for individuals with ADEM. However, it is not known whether any available form of treatment effects the time to recovery or the risk for complications.
Last updated on 05-01-20
Treatment for ADEM aims to suppress inflammation in the brain. Treatment is usually comprised of anti-inflammatory medications. Most individuals respond well to intravenous corticosteroids, such as methylprednisolone. When corticosteroids fail to work, plasmapheresis or intravenous immunoglobulin therapy may be utilized.
Last updated on 05-01-20
Although we haven't been able to locate any studies which discuss the usefulness of delayed treatment, corticosteroid therapy has been shown to shorten the duration of neurological symptoms and halt further progression of the disease in general. We recommend that you discuss your concerns with a healthcare provider familiar with the details of your relative's case.
Last updated on 05-01-20
The Cleveland Clinic provides information about acute disseminated encephalomyelitis (ADEM). Click on the above link to access information on this topic.
Last updated on 04-27-20
The National Multiple Sclerosis Society provides information on acute disseminated encephalomyelitis (ADEM). Click on the above link to access information on this topic.
Last updated on 04-27-20
The Transverse Myelitis Association provides information about acute disseminated encephalomyelitis (ADEM).
Last updated on 04-27-20
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