Living with Schöpf-Schulz-Passarge syndrome
A rare inherited condition of skin, hair, teeth, and nails with small cysts on the eyelids.
Understanding Schöpf-Schulz-Passarge syndrome
It includes multiple small cysts on the eyelids, thick skin on the palms and soles, thin hair, missing teeth, and nail changes. It begins in childhood or the teen years. Some people have also had skin cancers.
Signs & symptoms
Symptoms vary from person to person. GARD lists these among the most common:
- Thick skin on the palms and soles
- Sparse hair and thin eyebrows
- Missing teeth (hypodontia)
- Early loss of baby teeth
- Small blood vessels on the face
- Nail changes
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 cancer specialists, genetic specialists, gum, teeth and mouth specialists and skin, hair, and nail specialists.
- 3Consider genetic testing
Changes in WNT10A are linked to this condition. Genetic testing and counseling can help confirm a diagnosis and explain what it means for your family.
- 4Connect with expert centers
National Foundation for Ectodermal Dysplasias may keep lists of experts for this condition.
Care & treatment
- Care team
- Cancer specialists (oncologists); Genetic specialists (geneticists); Gum, teeth and mouth specialists (odontologists); Skin, hair, and nail specialists (dermatologists)
- Expert care
- Expert lists: National Foundation for Ectodermal Dysplasias
- 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 National Foundation for Ectodermal Dysplasias and other patient organizations
- 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
It is caused by changes in the WNT10A gene. It is autosomal recessive, so a child inherits a changed copy of the gene from each parent.
Also known as: eccrine tumors ectodermal dysplasia; eccrine tumors with ectodermal dysplasia; eccrine tumors-ectodermal dysplasia; keratosis palmoplantaris with cystic eyelids, hypodontia, and hypotrichosis; keratosis palmoplantaris-cystic eyelids-hypodontia-hypotrichosis syndrome; keratosis palmoplantaris, cystic eyelids, hypodontia, hypotrichosis syndrome
Patient organizations
- National Foundation for Ectodermal DysplasiasEctodermal dysplasias · United States
- Children's Skin Disease FoundationSkin diseases · United States
You are more than your diagnosis
Perspectives from people navigating life with Schöpf-Schulz-Passarge syndrome.
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