Living with Cerebral sclerosis similar to Pelizaeus-Merzbacher disease
GARD doesn't yet have detailed information on this condition.
Understanding Cerebral sclerosis similar to Pelizaeus-Merzbacher disease
GARD does not currently have detailed information for this condition. It lists the condition as inherited in an autosomal recessive way. GARD's Information Specialists can help people find information and resources.
Signs & symptoms
GARD doesn't list specific symptoms for this condition yet.
Not everyone has every symptom. GARD's list comes from the Human Phenotype Ontology.
Diagnosis
- 1Talk with your doctor
Share the symptoms you've noticed, when they started and your family health history. Notes and photos can help.
- 2See a specialist
Your doctor may refer you to a specialist who knows rare conditions.
- 3Ask which tests can help
Your care team will decide which exams and tests can confirm the diagnosis.
- 4Connect with expert centers
United Leukodystrophy Foundation may keep lists of experts for this condition.
Care & treatment
- Care team
- A doctor familiar with rare conditions, plus specialists as needed
- Expert care
- Expert lists: United Leukodystrophy Foundation
- Treatment
- GARD doesn't list specific treatments for this condition. Your care team will tailor care to your symptoms.
- Research
- Clinical trials and observational studies may be options. See the research section below.
General information, not medical advice. Your care team makes the decisions.
Everyday life
Living with a rare condition is easier with support.
- Connect with United Leukodystrophy Foundation
- Keep notes on symptoms, changes and questions for appointments
- Ask about patient registries that help research
- Look into financial aid and travel resources for care visits
Quick facts
GARD lists this as inherited in an autosomal recessive way, which means a child inherits a changed copy of a gene from each parent. It doesn't describe the cause further.
Patient organizations
- United Leukodystrophy FoundationCerebral sclerosis similar to Pelizaeus-Merzbacher disease · United States
You are more than your diagnosis
Perspectives from people navigating life with Cerebral sclerosis similar to Pelizaeus-Merzbacher disease.
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- Eligibility is confirmed by the study team
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