{"id":156,"date":"2021-06-11T10:45:18","date_gmt":"2021-06-11T10:45:18","guid":{"rendered":"https:\/\/bf2021.wpengine.com\/?page_id=156"},"modified":"2025-02-13T14:30:45","modified_gmt":"2025-02-13T14:30:45","slug":"welcome-test-page","status":"publish","type":"page","link":"https:\/\/acutedisseminatedencephalomyelitis.org\/","title":{"rendered":"Finding support for ADEM? Connect with people like you."},"content":{"rendered":"\n
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Join Our AcuteDisseminatedEncephalomyelitis.org Patient Support Community<\/h3>\n\n\n\n

ADEM Patient Support<\/strong><\/strong> is an online support group for patients, friends and families affected by ADEM (Acute Disseminated Encephalomyelitis). BensFriends.org<\/a>,<\/strong><\/em> powers this online patient support community, connecting people with rare diseases..<\/p>\n\n\n\n

Ben\u2019s Friends provides a safe, supportive space for rare disease patients, caregivers, family, and friends to connect and share.<\/p>\n\n\n\n

What is ADEM?<\/h3>\n\n\n\n

The National Institute of Health describes Acute Disseminated Encephalomyelitis as a brief but widespread inflammatory attack on the brain and spinal cord, damaging myelin\u2014the protective nerve fiber covering.<\/p>\n\n\n\n

ADEM often follows viral or bacterial infections and, less commonly, vaccination for measles, mumps, or rubella. Symptoms appear rapidly, starting with fever, fatigue, headache, nausea, vomiting, and, in severe cases, seizures or coma. The disease damages white matter, leading to vision loss, weakness, paralysis, and coordination issues affecting movement.<\/p>\n\n\n\n

Acute Disseminated Encephalomyelitis is sometimes misdiagnosed as a severe first attack of multiple sclerosis (MS), since the symptoms and the appearance of the white matter injury on brain imaging may be similar. ADEM has several features that differentiate it from MS. Unlike MS, ADEM has a rapid onset and often begins with fever. It is commonly preceded by a recent infection or immunization. ADEM can cause impaired consciousness or even coma, which is rare in MS. It is more common in children, while MS is rarely diagnosed in them. ADEM usually occurs as a single attack, whereas MS involves multiple attacks over time.<\/p>\n\n\n\n

Doctors use MRI to detect brain lesions. Older lesions suggest MS, as it can develop before symptoms appear. In rare cases, a brain biopsy may be needed to distinguish ADEM from other myelin diseases.<\/p>\n\n\n\n

(NIH retrieved November 2021.)<\/p>\n\n\n\n

Why Join AcuteDisseminatedEncephalomyelitis.org?<\/h3>\n\n\n\n

AcuteDisseminatedEncephalomyelitis.org offers a safe online community for patients and families (12+) to find information, support, and discussion. Members come from many backgrounds. Some have a strong religious faith, and others no faith; some are children and others adults, rich and poor, graduate educated or taught by life. Our common denominators are that we share a life journey, and we try to help each other.<\/p>\n\n\n\n

Though we get occasional visits from medical doctors, the site is not routinely supported by medical professionals. Nobody here can diagnose you or tell you what your treatment choices \u201cshould\u201d be. We might inform your choices by sharing individual experiences and information developed by study as lay people. But AcuteDisseminatedEncephalomyelitis.org is not intended to replace the advice or treatment of licensed medical professionals. Readers should validate any information they take away from here, against the experience of a licensed medical doctor. Site owners and moderators are not legally responsible for the accuracy of information shared on the site.<\/p>\n\n\n\n

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