Living with Huntington disease-like 1
A rare genetic brain disease of adults with movement, mood, and thinking changes.
Understanding Huntington disease-like 1
People often have personality changes, aggression, mania, anxiety, or depression. Thinking and memory decline quickly and can lead to dementia. Movement problems include poor coordination, Parkinson-like signs, jerking, and involuntary movements. Some people have seizures, stiffness, or urine leakage. It begins in adulthood.
Signs & symptoms
Symptoms vary from person to person. GARD lists these among the most common:
- Involuntary movements (chorea)
- Changes in behavior and mood
- Depression and delusions
- Decline in thinking (dementia)
- Slurred speech (dysarthria)
- Trouble walking and coordination (gait ataxia)
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.
- 3Consider genetic testing
Changes in PRNP are linked to this condition. Genetic testing and counseling can help confirm a diagnosis and explain what it means for your family.
Care & treatment
- Care team
- Brain and nervous system specialists (neurologists); Genetic specialists (geneticists)
- Expert care
- Ask about multidisciplinary care centers for rare conditions
- 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 rare disease patient organizations for support
- 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 PRNP gene cause this condition. It is autosomal dominant, meaning one changed copy of the gene can be enough to cause it.
Also known as: autosomal dominant huntington-like neurodegenerative disorder; early-onset prion disease with prominent psychiatric features; hdl1; hdl1 - huntington disease-like 1; hln1; huntington disease-like type 1
Patient organizations
Rare-disease groups that can help
- Global GenesRare Diseases · United States
- National Organization for Rare DisordersRare Diseases · United States
- Genetic AllianceRare Diseases · United States
- RARE FoundationRare Diseases · United States
You are more than your diagnosis
Perspectives from people navigating life with Huntington disease-like 1.
Explore research for Huntington disease-like 1
Explore actively recruiting Huntington disease-like 1 studies with HealthSpark.
Find actively recruiting studies for Huntington disease-like 1 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
Powered by HealthSpark, our AI chat helper
I can help you find recruiting Huntington disease-like 1 studies. Enter a ZIP code, address or city below and I'll look within 50 miles.
Powered by HealthSpark, our AI chat helper · Study information from ClinicalTrials.gov · Eligibility is confirmed by the study team.
Get Signals for Huntington disease-like 1
Stay in the loop with community stories and updates from medical researchers.
Create a living journal that talks back
HealthStory evolves private journaling with a living AI journal that talks back and asks thoughtful questions, helping you capture your Huntington disease-like 1 experiences more deeply and prepare for better conversations with your doctors and care team.
Your journal is private. Sharing your story publicly is a separate choice, made with Share your story above.