Living with Hypotrichosis-osteolysis-periodontitis-palmoplantar keratoderma syndrome
An extremely rare condition affecting hair, skin, fingertips, teeth, and gums.
Understanding Hypotrichosis-osteolysis-periodontitis-palmoplantar keratoderma syndrome
This is a type of ectodermal dysplasia, a group of conditions that affect the hair, skin, nails, and teeth. Symptoms may begin in the newborn period or infancy. Tongue folds (lingua plicata) and a fast heart rhythm (ventricular tachycardia) have also been seen.
Signs & symptoms
Symptoms vary from person to person. GARD describes these features:
- Hair loss over the whole body, sometimes with scarring
- Thin, tapered fingertips from bone loss (acro-osteolysis)
- Thick, curved nails (onychogryphosis)
- Gum disease and cavities that lead to early tooth loss
- Thick skin on the palms and soles
- Red, scaly, psoriasis-like skin patches on arms and legs
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 genetic specialists, gum, teeth and mouth 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.
- 4Connect with expert centers
National Foundation for Ectodermal Dysplasias may keep lists of experts for this condition.
Care & treatment
- Care team
- 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
GARD says changes in genes cause this condition, but it doesn't list a specific gene or inheritance pattern.
Also known as: hopp syndrome; hypotrichosis-osteolysis-periodontitis-palmoplantar hyperkeratosis syndrome; hypotrichosis-striate palmoplantar hyperkeratosis-acroosteolysis-periodontitis syndrome; hypotrichosis-striate palmoplantar keratoderma-acroosteolysis-periodontitis syndrome; hypotrichosis, osteolysis, periodontitis, palmoplantar keratoderma syndrome
Patient organizations
- National Foundation for Ectodermal DysplasiasHypotrichosis-osteolysis-periodontitis-palmoplantar keratoderma syndrome · United States
- Children's Skin Disease FoundationSkin diseases · United States
You are more than your diagnosis
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