Overview
Schilder disease, also known as Schilder's diffuse myelinoclastic sclerosis or myelinoclastic diffuse sclerosis, is a rare brain disorder that destroys the protective coating around nerve fibers called myelin. This coating acts like insulation on electrical wires — when it breaks down, nerve signals cannot travel properly through the brain. The disease mainly affects children and teenagers, though it can occasionally appear in adults. It is considered a rare form of multiple sclerosis (MS) or a closely related condition. The damage to myelin typically occurs in large patches in the white matter of the brain — the deep tissue that connects different brain regions. This widespread damage can cause a wide range of serious symptoms depending on which areas of the brain are affected. Common problems include vision loss, weakness on one or both sides of the body, difficulty speaking, seizures, and changes in thinking or behavior. Treatment mainly focuses on managing symptoms and slowing the disease. Corticosteroids like prednisone are often used during flare-ups and can lead to significant improvement in some patients. Because Schilder disease is so rare and can look like other brain diseases, getting the right diagnosis can take time. Ongoing care from a team of specialists is important for the best outcomes.
Also known as:
Key symptoms:
Vision problems or sudden vision loss in one or both eyesWeakness or paralysis on one or both sides of the bodyDifficulty speaking or understanding speechSeizuresHeadachesProblems with balance and coordinationChanges in behavior or personalityMemory and thinking difficultiesHearing lossDifficulty swallowingBladder or bowel control problemsFatigue and low energy
Clinical phenotype terms (19)— hover any for plain English
Sporadic
Usually appears on its own, not inherited from a parent
Childhood
Begins in childhood, roughly ages 1 to 12
Treatments
No FDA-approved treatments are currently listed for Schilder disease.
View clinical trials →Clinical Trials
View all trials with filters →No actively recruiting trials found for Schilder disease at this time.
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Rare Disease Specialist
Rare Disease Specialist
Rare Disease Specialist
Treatment Centers
8 centersBaylor College of Medicine Rare Disease Center ↗
Baylor College of Medicine
📍 Houston, TX
🏥 NORDStanford Medicine Rare Disease Center ↗
Stanford Medicine
📍 Stanford, CA
🔬 UDNNIH Clinical Center Undiagnosed Diseases Program ↗
National Institutes of Health
📍 Bethesda, MD
🔬 UDNUCLA UDN Clinical Site ↗
UCLA Health
📍 Los Angeles, CA
🔬 UDNBaylor College of Medicine UDN Clinical Site ↗
Baylor College of Medicine
📍 Houston, TX
🔬 UDNHarvard/MGH UDN Clinical Site ↗
Massachusetts General Hospital
📍 Boston, MA
🏥 NORDMayo Clinic Center for Individualized Medicine ↗
Mayo Clinic
📍 Rochester, MN
👤 Mayo Clinic Center for Individualized Medicine
🏥 NORDUCLA Rare Disease Day Program ↗
UCLA Health
📍 Los Angeles, CA
Travel Grants
No travel grants are currently matched to Schilder disease.
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Caregiver Resources
NORD Caregiver Resources
Support, advocacy, and financial assistance for caregivers of rare disease patients.
Mental Health Support
Rare disease caregiving can be isolating. Connect with counseling and peer support.
Family & Caregiver Grants
Financial assistance programs specifically for caregivers of rare disease patients.
Social Security Disability
Learn how rare disease patients may qualify for SSDI/SSI benefits.
Questions for your doctor
Bring these to your next appointment
- Q1.How confident are you in the diagnosis of Schilder disease, and what other conditions have been ruled out?,What is the recommended steroid treatment plan, and what side effects should we watch for?,How will we monitor for relapses, and what symptoms should prompt an emergency visit?,Should we consider disease-modifying therapies used for multiple sclerosis, and if so, which ones?,What therapies — physical, occupational, or speech — does my child need right now?,What school accommodations or support services should we put in place?,Are there any specialists or centers with specific experience in Schilder disease that you would recommend?
Common questions about Schilder disease
What is Schilder disease?
Schilder disease, also known as Schilder's diffuse myelinoclastic sclerosis or myelinoclastic diffuse sclerosis, is a rare brain disorder that destroys the protective coating around nerve fibers called myelin. This coating acts like insulation on electrical wires — when it breaks down, nerve signals cannot travel properly through the brain. The disease mainly affects children and teenagers, though it can occasionally appear in adults. It is considered a rare form of multiple sclerosis (MS) or a closely related condition. The damage to myelin typically occurs in large patches in the white matt
How is Schilder disease inherited?
Schilder disease follows a sporadic inheritance pattern. Genetic counseling can help families understand recurrence risk and testing options.
At what age does Schilder disease typically begin?
Typical onset of Schilder disease is childhood. Age of onset can vary across affected individuals.
Which specialists treat Schilder disease?
25 specialists and care centers treating Schilder disease are listed on UniteRare, sourced from ClinicalTrials.gov principal investigators, published research, and the NPPES NPI registry.