Living with ADan amyloidosis
An inherited brain condition with balance problems, tremor, changes in thinking, and memory loss.
Understanding ADan amyloidosis
It is described as including loss of balance and coordination (ataxia), a tremor when reaching for things (intention tremor), psychosis, and dementia. It is linked to a change in the ITM2B gene.
Signs & symptoms
Symptoms vary from person to person. GARD's summary says they include:
- Trouble with balance and coordination (ataxia)
- Shaking when reaching for things (intention tremor)
- Psychosis
- Dementia
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.
- 3Consider genetic testing
Changes in ITM2B are linked to this condition. Genetic testing and counseling can help confirm a diagnosis and explain what it means for your family.
- 4Connect with expert centers
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 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 Foundation
- 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
Changes in the ITM2B gene cause this condition. It is autosomal dominant, so a changed copy of the gene from one parent can be enough.
Also known as: cerebellar ataxia, cataract, deafness, and dementia or psychosis; cerebral amyloid angiopathy, itm2b-related, 2; cerebral amyloid angiopathy, itm2b-related, type 2; familial danish dementia; familial dementia danish type; familial dementia, danish type
Patient organizations
- Amyloidosis FoundationADan amyloidosis · United States
You are more than your diagnosis
Perspectives from people navigating life with ADan amyloidosis.
Explore research for ADan amyloidosis
Explore actively recruiting ADan amyloidosis studies with HealthSpark.
Find actively recruiting studies for ADan amyloidosis with HealthSpark. Share your city to explore research near you.
- Recruiting studies from ClinicalTrials.gov
- Share your city to look for research near you
- Eligibility is confirmed by the study team
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Powered by HealthSpark, our AI chat helper · Study information from ClinicalTrials.gov · Eligibility is confirmed by the study team.
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