Acute Disseminated Encephalomyelitis or ADEM is a rare disorder that involves extensive swelling in the brain and spinal cord. It commonly occurs after either a bacterial or viral infection, usually in the upper respiratory tract. 

The inflammation is thought to stem from an autoimmune reaction, instead of being caused directly by the virus or bacteria. ADEM can affect anyone regardless of age.

Symptoms of ADEM include fever, headache, nausea and vomiting, fatigue, and muscle weakness. It’s also common for patients to experience confusion, blurred vision, seizures, paralysis and even coma. Everyone’s experience, however, may vary depending on whether ADEM has attacked the brain or spinal cord. 

There is no single laboratory test that can diagnose ADEM. It’s usually a combination of tests which doctors assess both to rule out other conditions and determine if it’s ADEM. 

A lumbar puncture, for instance, allows physicians to determine the presence of white blood cells in the spinal fluid which is characteristic of ADEM. Magnetic resonance imaging (MRI) is also conducted to find lesions and other abnormalities in the brain and spinal cord. 

Just as there is no one diagnostic test for ADEM, there is also, at present, no definite cure for it. 

Doctors typically depend on steroids to ease the inflammation. Another form of treatment for the inflammation is plasmapheresis, a process where components of the blood are separated to control the autoimmune response.

Afterwards, patients may require therapy to address the effects of ADEM on their speech, movement, and cognitive abilities.

It is important to keep in mind that patients can and do get better, however, healing can be very slow. Stress is the worst thing for healing, so patients should try to control their stress. 

Celebrating each and every little improvement can also help in the patient’s progress. Comparing today to yesterday, last week, last month and the day of diagnosis could allow them to better appreciate their improvements. 

Another important thing to keep in mind when dealing with ADEM is that caretakers must take care of themselves since they are and will be needed.

The Living with ADEM community of Ben’s Friends was founded in October 2011 to help people affected by ADEM.

These include parents whose kids are currently battling this rare disorder and would like to know how other kids’ condition improved day-by-day. Those parents whose children have suffered from ADEM and are looking for positive stories from others to find hope with regards to their future. Or the adult members who are looking for tips on how to improve the effects ADEM had on them. Some members are caregivers who consider our community a safe space to share their thoughts and emotions knowing that the other members would listen without judgment. 

Thank you to everyone who makes it possible for us to have a caring online support group like the Living with ADEM community.

If you or a loved one has been affected by ADEM, we invite you to join our Living with ADEM community so that you can get in touch with people who truly understand what you’re going through.

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