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Osteopetrosis: the types, the signs, what causes it, getting a diagnosis, treatment, and living with it
For anyone just told it is osteopetrosis; for parents of a baby or child with it; for teenagers and adults whose x-ray found it; and for the people who care for them. The National Institute of Arthritis and Musculoskeletal and Skin Diseases (NIAMS, part of the NIH) says osteopetrosis is a group of rare genetic disorders that make bones grow abnormally and become overly dense, so they are brittle and break easily; that the thick bone can press on nerves and crowd out the bone marrow that makes blood cells; and that it can be mild or severe, starting in infancy or not until adulthood. This page passes on, by name, what NIAMS says: the types and the signs; how it is inherited; the tests; medicines, therapy, bone care, a bone marrow transplant and the team; and checkups, exercise, food and support. It builds the words to say to a doctor or nurse, and prints a card to keep.
Right now
- Bleeding that will not stop, trouble breathing, a face that droops suddenly, a bone through the skin, a badly bent limb, or anyone in danger right now: call 911 (ours).
- A fever or another sign of infection: call the doctor today (ours; NIAMS says low blood cell levels can lead to infection). See Fever in a baby or child. A bone that may be broken: keep it still and get care today (ours). See A bone that might be broken.
- Thinking about suicide: call or text 988, any time (ours). See Depression.
More help
- Bones and the body: Pain, bones and joints: find the right page · A bone that might be broken · Osteogenesis imperfecta · Fibrous dysplasia · Child health · Eye care · Hearing loss · When you can’t afford a dentist.
- How you feel: Pain that has lasted for months · 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.
Pain, a bone or a joint, and not sure this is the right page? The pages on this site for back pain, arthritis, pain that lasts, headaches, broken bones and sickle cell, on one list.
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 Osteopetrosis page, both parts: Overview, Symptoms, & Causes and Diagnosis, Treatment, & Steps to Take (NIH, last reviewed August 2023), and its shorter Spanish twin, Osteopetrosis (October 2023). Ours: 911 for bleeding that will not stop, trouble breathing, a face that droops suddenly, a bone through the skin, a badly bent limb, a hurt head, neck or back, or anyone in danger; calling the doctor today for a fever or another sign of infection; keeping a bone that may be broken still and getting care today; telling the doctor soon about a change in sight or hearing, and an emergency room for sight lost suddenly; 988 for thoughts of suicide; not stopping or changing a prescribed medicine on your own; 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 long people with each type live (NIAMS says only that the severe infantile form shortens life expectancy); which genes are involved (the pages do not name them); and NIAMS’s research pages. This page saves nothing and loads no trackers.