Schilder disease

Schilder disease (also known as myelinoclastic diffuse sclerosis) is an extremely rare disease that involves the breakdown of the protective coating (called myelin) over nerves in the brain and spinal cord. It typically begins in childhood or adolescence and slowly gets worse. Lesions form in each half of the brain.

The cause of Schilder disease is unknown, but scientists think it may be a type of multiple sclerosis. The disease has no cure.

Symptoms of Schilder disease may include:

• Weakness on one side of the body
• Difficulty with speech (dysarthria)
• Stiff muscles
• Problems with balance
• Headache
• Seizures
• Personality changes
• Problems with hearing or vision
• Loss of bowel or bladder control
• Dementia

Treatment generally follows the established standards in multiple sclerosis and may include corticosteroids, beta-interferon or immunosuppressive therapy, and symptomatic treatment.

Schilder disease is not the same as Addison-Schilder disease, a form of adrenoleukodystrophy (a genetic disorder that involves damage to myelin).

How can I or my loved one help improve care for people with Schilder disease?

Consider participating in a clinical trial so clinicians and scientists can learn more about Schilder disease. 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.

For information about participating in clinical research visit NIH Clinical Research Trials and You. Learn about clinical trials currently looking for people with Schilder disease at ClinicalTrials.gov.

Where can I find more information about Schilder disease?

Information may be available from the following resource:

National Multiple Sclerosis Society
Phone: 800-344-4867

Content source: https://www.ninds.nih.gov/health-information/disorders/schilders-disease Accessed June 29, 2023.

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