Overview
An aneurysmal bone cyst (ABC) is a non-cancerous (benign) growth that forms inside a bone. Despite the word 'cyst,' it is actually a sponge-like lesion filled with blood-filled spaces separated by thin walls of bone and tissue. ABCs can grow quickly and weaken the bone from the inside, which can lead to pain, swelling, and sometimes a broken bone (fracture) even from a minor injury. They most often affect the long bones of the arms and legs, the spine, and the pelvis, but they can occur in almost any bone in the body. ABCs are sometimes called 'aneurysmal bone cysts' or simply 'ABCs.' They are considered a rare bone tumor, though they are not cancerous and do not spread to other parts of the body. Some ABCs arise on their own (called primary ABCs), while others develop alongside another bone condition such as a giant cell tumor or fibrous dysplasia (called secondary ABCs). Recent research has found that many primary ABCs are linked to specific changes (rearrangements) in genes inside the bone cells, particularly involving the USP6 gene. The main goals of treatment are to remove or destroy the cyst, relieve pain, and prevent fractures. Treatment options include surgery to scrape out the cyst (curettage), bone grafting, injections of sclerosing agents, and newer minimally invasive techniques. Most people, especially children and teenagers, do well with treatment, though the cyst can sometimes come back and need further care.
Key symptoms:
Pain in the affected bone, often getting worse over timeSwelling or a lump near the affected areaTenderness when pressing on the boneBone fracture from a minor injury or even normal activityLimited movement of a nearby jointBack pain or nerve symptoms if the spine is affectedMuscle weakness near the affected boneVisible deformity of the limb or spine in severe casesNighttime bone pain that disrupts sleep
Sporadic
Usually appears on its own, not inherited from a parent
Juvenile
Begins in the teen years
Treatments
No FDA-approved treatments are currently listed for Aneurysmal bone cyst.
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Treatment Centers
8 centersBaylor College of Medicine Rare Disease Center ↗
Baylor College of Medicine
📍 Houston, TX
🏥 NORDStanford Medicine Rare Disease Center ↗
Stanford Medicine
📍 Stanford, CA
🔬 UDNNIH Clinical Center Undiagnosed Diseases Program ↗
National Institutes of Health
📍 Bethesda, MD
🔬 UDNUCLA UDN Clinical Site ↗
UCLA Health
📍 Los Angeles, CA
🔬 UDNBaylor College of Medicine UDN Clinical Site ↗
Baylor College of Medicine
📍 Houston, TX
🔬 UDNHarvard/MGH UDN Clinical Site ↗
Massachusetts General Hospital
📍 Boston, MA
🏥 NORDMayo Clinic Center for Individualized Medicine ↗
Mayo Clinic
📍 Rochester, MN
👤 Mayo Clinic Center for Individualized Medicine
🏥 NORDUCLA Rare Disease Day Program ↗
UCLA Health
📍 Los Angeles, CA
Financial Resources
1 resourcesAQNEURSA
IntraBio Inc
AQNEURSA — Contact IntraBio Inc
Travel Grants
No travel grants are currently matched to Aneurysmal bone cyst.
Community
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Caregiver Resources
NORD Caregiver Resources
Support, advocacy, and financial assistance for caregivers of rare disease patients.
Mental Health Support
Rare disease caregiving can be isolating. Connect with counseling and peer support.
Family & Caregiver Grants
Financial assistance programs specifically for caregivers of rare disease patients.
Social Security Disability
Learn how rare disease patients may qualify for SSDI/SSI benefits.
Questions for your doctor
Bring these to your next appointment
- Q1.What type of aneurysmal bone cyst does my child or I have — primary or secondary — and does that change the treatment plan?,Which treatment do you recommend for my specific case, and why?,What is the risk that the cyst will come back, and how will we monitor for that?,Are there any activity restrictions I need to follow to avoid a fracture?,How long will recovery take, and when can I return to school, work, or sports?,Should the tumor tissue be tested for USP6 gene changes, and would that affect treatment?,Are there clinical trials or newer treatments I should know about?
Common questions about Aneurysmal bone cyst
What is Aneurysmal bone cyst?
An aneurysmal bone cyst (ABC) is a non-cancerous (benign) growth that forms inside a bone. Despite the word 'cyst,' it is actually a sponge-like lesion filled with blood-filled spaces separated by thin walls of bone and tissue. ABCs can grow quickly and weaken the bone from the inside, which can lead to pain, swelling, and sometimes a broken bone (fracture) even from a minor injury. They most often affect the long bones of the arms and legs, the spine, and the pelvis, but they can occur in almost any bone in the body. ABCs are sometimes called 'aneurysmal bone cysts' or simply 'ABCs.' They ar
How is Aneurysmal bone cyst inherited?
Aneurysmal bone cyst follows a sporadic inheritance pattern. Genetic counseling can help families understand recurrence risk and testing options.
At what age does Aneurysmal bone cyst typically begin?
Typical onset of Aneurysmal bone cyst is juvenile. Age of onset can vary across affected individuals.
Which specialists treat Aneurysmal bone cyst?
18 specialists and care centers treating Aneurysmal bone cyst are listed on UniteRare, sourced from ClinicalTrials.gov principal investigators, published research, and the NPPES NPI registry.
What treatment and support options exist for Aneurysmal bone cyst?
1 patient support program are currently tracked on UniteRare for Aneurysmal bone cyst. See the treatments and support programs sections for copay assistance, eligibility, and contact details.