Living with Anonychia-onychodystrophy syndrome
A rare condition that affects how fingernails and toenails form from birth, from damaged-looking to missing.
Understanding Anonychia-onychodystrophy syndrome
Nails can look abnormal or damaged (onychodystrophy), or they can be completely missing (anonychia). The condition can appear in many members of the same family over several generations and can pass from parent to child.
Signs & symptoms
GARD doesn't list specific symptoms for this condition, but its summary describes the nail changes:
- Nails that look abnormal or damaged (onychodystrophy)
- Completely missing nails (anonychia)
- Changes in both fingernails and toenails
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 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
- 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 (also called variants) cause this condition. It can be inherited in a dominant way (one changed copy of the gene) or a recessive way (a changed copy from each parent).
Also known as: absent nails and dystrophic nails; anonychia/hyponychia and onychodystrophy
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 Anonychia-onychodystrophy syndrome.
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