What it is
There is no cure, but medicines, therapy and support can help manage symptoms.
Genetic counselling and testing are available for family members who want to know if they carry the gene.
Common signs
- Difficulty concentrating and memory problems
- Mood changes, depression and irritability
- Jerky, uncontrollable movements
- Clumsiness and balance problems
- Difficulty speaking and swallowing
How it is usually diagnosed
- Assessment by a neurologist
- Genetic test
- Brain scans, sometimes
Records worth keeping
Keeping these together makes each appointment easier, especially when you see a new doctor:
- Genetic test results
- Neurology letters
- Speech, physio and occupational therapy notes
- Care plans
Questions to ask your doctor
- What support is available for us?
- Should my children have genetic counselling?
- Which symptoms can treatment help?
When to get help right away
Call 112 or go to the nearest emergency department if you have:
- Choking, or thoughts of harming yourself: call 112
This page is general information. It is not a diagnosis and does not replace a doctor who knows your history. Medfold keeps your records organised; it does not interpret them.