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Table 1 Stages during the life of a Huntington's disease patient

From: Huntington's disease: a clinical review

A. Preclinical stage

A1. At-risk stage (50%), one affected parent

- Anxiousness for the future

 

- Uncertainty about carriership

 

- Care for affected parent

A2.Gene carrier, premanifest stage

- Certainty about carriership

 

- New position in the family

 

- Renewed uncertainty about onset

 

- Care for affected parent and own family

A3. Transition phase

- Strong feelings about changes in cognition

 

- Changes in behaviour

 

- Changes in motor activity

 

- Uncertainty remains

B. Clinical stage

 

B1. Clinical stage I

- Presentation first symptoms: neurological, cognitive or psychiatric

 

- Chorea most prominent symptom

 

- Independent in ADL

 

- Burden for the family mainly psychological

 

- Rare death, unless suicide

B2 Clinical stage II

- Motor disturbance more generalised

 

- Physical dependence starts

 

- Burden for family psychological and physical

 

- Death by other cause, suicide, euthanasia

B3. Clinical stage III

- Severe generalised motor disturbance

 

- Almost complete physical dependence

 

- Patient completely dependent on care

 

- Burden for family mainly physical

 

- Death