Living with Anonychia-onychodystrophy with brachydactyly type b and ectrodactyly
A rare inherited condition affecting the nails and the tips of the fingers and toes.
Understanding Anonychia-onychodystrophy with brachydactyly type b and ectrodactyly
Nails change over time and can become completely absent on many fingers and toes. The bones at the tips of some fingers and toes, especially the fifth finger and thumbs, may be short or missing. In some families, girls also have very large breast growth during puberty, while boys in the same family have only the nail and bone changes.
Signs & symptoms
GARD doesn't list specific symptoms for this condition, but its summary describes these features:
- Nails with changes (nail dystrophy) that may be lost over time
- Missing nails on the last two fingers and all toes
- Shortened or missing fingertips, especially thumbs and fifth finger
- Underdeveloped or absent small bones at the tips
- Very large breast growth in puberty in some girls
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
National Foundation for Ectodermal Dysplasias 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: 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
- 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 describes this as an inherited condition but doesn't list a gene or inheritance pattern here.
Also known as: kumar-levick syndrome
Patient organizations
- National Foundation for Ectodermal DysplasiasAnonychia-onychodystrophy with brachydactyly type b and ectrodactyly · United States
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