Living with Osteopathia striata-pigmentary dermopathy-white forelock syndrome
A rare bone condition with lines in the long bones, darker skin patches, and a white patch of hair above the forehead.
Understanding Osteopathia striata-pigmentary dermopathy-white forelock syndrome
The bone changes show on X-rays as lengthwise stripes (striations) in most long bones. The skin has darker flat patches, and a section of hair above the forehead is white. GARD lists onset as newborn.
Signs & symptoms
Symptoms vary from person to person. GARD lists these among the most common:
- Stripes in the long bones on X-ray (osteopathia striata)
- Darker flat patches of skin
- White patch of hair above the forehead
- Differences in the shape of the pelvis bones
- Differences at the ends of long bones
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
Specialists who may be involved include bone and joint specialists, genetic specialists and skin, hair, and nail specialists.
- 3Ask which tests can help
Your care team will decide which exams and tests can confirm the diagnosis.
Care & treatment
- Care team
- Bone and joint specialists (orthopedists or orthopedic surgeons); Genetic specialists (geneticists); Skin, hair, and nail specialists (dermatologists)
- Expert care
- Ask about multidisciplinary care centers for rare conditions
- 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 Children's Skin Disease 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 says changes in genes cause this condition. It lists autosomal dominant and X-linked inheritance.
Also known as: osteopathia striata associated with familial dermopathy and white forelock; osteopathia striata with pigmentary dermopathy including white forelock; osteopathia striata, pigmentary dermopathy, white forelock syndrome; whyte murphy syndrome; whyte-murphy syndrome
Patient organizations
- Children's Skin Disease FoundationSkin diseases · United States
Broader rare-disease groups
- Global GenesRare Diseases · United States
- National Organization for Rare DisordersRare Diseases · United States
- Genetic AllianceRare Diseases · United States
- RARE FoundationRare Diseases · United States
You are more than your diagnosis
Perspectives from people navigating life with Osteopathia striata-pigmentary dermopathy-white forelock syndrome.
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