Living with Hereditary cavernous hemangioma of brain
A rare inherited condition with clusters of enlarged blood vessels in the brain that may cause seizures or bleeding.
Understanding Hereditary cavernous hemangioma of brain
Some people have no symptoms. Others can have seizures, headaches, weakness or numbness in one area, or bleeding in the brain. It can appear at any time in life.
Signs & symptoms
Symptoms vary from person to person. GARD lists these among the most common:
- Seizures
- Headache
- Bleeding in the brain
- Muscle weakness
- Numbness or pins and needles
- Raised pressure inside the skull
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 brain and nervous system specialists and genetic specialists.
- 3Ask which tests can help
Your care team will decide which exams and tests can confirm the diagnosis.
- 4Connect with expert centers
Alliance to Cure Cavernous Malformation may keep lists of experts for this condition.
Care & treatment
- Care team
- Brain and nervous system specialists (neurologists); Genetic specialists (geneticists)
- Expert care
- Expert lists: Alliance to Cure Cavernous Malformation
- 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 Alliance to Cure Cavernous Malformation
- 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 is autosomal dominant, so one changed copy of the gene is enough.
Also known as: familial brain cavernous angioma; familial brain cavernous hemangioma; familial cerebral cavernoma; familial cerebral cavernous malformation; famililal cerebral cavernous malformations; hereditary brain cavernous angioma
Patient organizations
- Alliance to Cure Cavernous MalformationHereditary cavernous hemangioma of brain · United States
You are more than your diagnosis
Perspectives from people navigating life with Hereditary cavernous hemangioma of brain.
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