Living with Hemiparkinsonism-hemiatrophy syndrome
A rare movement disorder with shrinking of one side of the body and slow, stiff, shaky movement on that side.
Understanding Hemiparkinsonism-hemiatrophy syndrome
Signs build slowly and include slowed movement (bradykinesia), stiffness, and tremor. Many people first have dystonia (muscle contractions causing twisting) in an arm or leg, which can spread to both sides. Curved spine (scoliosis) is often seen. It starts in the teen years or adulthood.
Signs & symptoms
Symptoms vary from person to person. GARD lists these among the most common:
- Shrinking of one side of the body (hemiatrophy)
- Slow movements (bradykinesia)
- Tremor
- Muscle contractions causing twisting (dystonia)
- Weakness on one side of the body
- Trouble forming speech (dysarthria)
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
Parkinson & Movement Disorder Alliance 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: Parkinson & Movement Disorder Alliance
- 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 Parkinson & Movement Disorder Alliance
- 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.
Also known as: hemiparkinsonism hemiatrophy syndrome; hp-ha syndrome
Patient organizations
- Parkinson & Movement Disorder AllianceParkinsonism · United States
Broader rare-disease groups
- 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 Hemiparkinsonism-hemiatrophy syndrome.
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