Living with Hereditary cerebral hemorrhage with amyloidosis
An inherited condition in which protein builds up in brain blood vessels, causing strokes and memory and thinking changes.
Understanding Hereditary cerebral hemorrhage with amyloidosis
People often have strokes, loss of thinking skills (dementia), and other nervous system problems starting in mid-adulthood. There are many types, named for the region where they were first found, and each has a different genetic cause. The Dutch type is the most common. Stroke is often the first sign, and some people have repeated seizures.
Signs & symptoms
Symptoms vary from person to person. GARD lists these among the most common:
- Bleeding in the brain
- Stroke
- Headache
- Seizures
- Loss of thinking skills (dementia)
- Worsening nervous system symptoms
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 autoimmune and inflammatory disease specialists, 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
Amyloidosis Support Groups Inc. and Amyloidosis Foundation may keep lists of experts for this condition.
Care & treatment
- Care team
- autoimmune and inflammatory disease specialists (rheumatologists); Brain and nervous system specialists (neurologists); Genetic specialists (geneticists)
- Expert care
- Expert lists: Amyloidosis Support Groups Inc., Amyloidosis Foundation
- 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 Amyloidosis Support Groups Inc. and other patient organizations
- 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, and the type depends on the gene. It is autosomal dominant, so one changed copy of the gene is enough.
Also known as: cerebral amyloid angiopathy; cerebral amyloid angiopathy, hereditary; dutch hereditary cerebral amyloid angiopathy; hchwa; hchwa - hereditary cerebral hemorrhage with amyloidosis; hereditary cerebral haemorrhage with amyloidosis - dutch type
Patient organizations
- Amyloidosis Support Groups Inc.Hereditary cerebral hemorrhage with amyloidosis · United States
- Amyloidosis FoundationHereditary cerebral hemorrhage with amyloidosis · United States
You are more than your diagnosis
Perspectives from people navigating life with Hereditary cerebral hemorrhage with amyloidosis.
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