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Pachyonychia congenita: the types, the signs, what causes it, getting a diagnosis, treatment, and living with it
For anyone just told it is pachyonychia congenita (PC); for parents of a baby or child with it; for adults who have lived with it for years; and for the people who care for them. The National Institute of Arthritis and Musculoskeletal and Skin Diseases (NIAMS, part of the NIH) says PC is a rare genetic disorder that mainly affects the skin and nails; that it usually begins at birth or early in life; that what affects people most is severely painful calluses on the soles that make walking hard; and that there is no specific treatment yet, but there are ways to manage the pain and the other symptoms. This page passes on, by name, what NIAMS says: the types and the signs; how it is passed on; the exam and the genetic test; caring for calluses, nails and cysts, and the team; and shoes, gloves, mouth care, moisturizers and support. It builds the words to say to a doctor or nurse, and prints a card to keep.
Right now
- Trouble breathing, noisy breathing, or anyone in danger right now: call 911 (ours; NIAMS says a white film on the throat can block the airway and needs medical attention right away). A new hoarse cry or voice, or a baby who is not feeding well: call the doctor today (ours).
- A nail or a cyst that gets redder, hotter, more painful or starts to drain, or a fever: call the doctor the same day (ours).
- Thinking about suicide: call or text 988, any time (ours). See Depression.
More help
- Skin and the body: Rashes and skin: find the right page · Ichthyosis · Epidermolysis bullosa · Child health · Ear infection in a child · When you can’t afford a dentist.
- How you feel: Pain that has lasted for months · Trouble sleeping · Depression · Caring for someone.
- Care and costs: Symptom diary · Medicines list · When you need a doctor and can’t pay · Get ready for the appointment.
- In a crisis: Help right now (988, 911). All our free tools.
This page and its wording were written with AI (Claude) for Scarlet Beast (our AI policy). No doctor, nurse or therapist has reviewed it. The facts were read on October 16, 2026 on NIAMS’s Pachyonychia Congenita page, both parts: Overview, Symptoms, & Causes and Diagnosis, Treatment, & Steps to Take (NIH, last reviewed November 2024), and its Spanish twin, Paquioniquia congénita (February 2025), which says the same. Ours: 911 for trouble breathing, noisy breathing, or anyone in danger; calling the doctor today for a new hoarse cry or voice, or a baby who is not feeding well; calling the doctor the same day for a nail or cyst that looks infected, or a fever; 988 for thoughts of suicide; not stopping or changing a prescribed medicine on your own; bringing the NIAMS pages to a doctor who has not seen PC; notes and dates; asking what each treatment would change and what it costs; and the order of the steps. What we left out: any brand or dose; any medicine NIAMS does not name; how strong a bleach bath should be (NIAMS says to talk to your doctor first); the names of the five genes (the pages do not give them); and NIAMS’s research pages. This page saves nothing and loads no trackers.