What is Huntington's disease?
Huntington's disease is a rare, hereditary neurodegenerative disease caused by mutations in the HTT gene. It is characterized by uncontrolled movements (chorea), mental changes and progressive mental decline.
Juvenile form (Westphal variant):
Begins in childhood or adolescence and usually progresses more rapidly. Instead of chorea, the focus is on muscle stiffness, epileptic seizures and developmental regression.
Aids that are often used for Huntington's disease:
Aids and support for everyday life
As Juvenile Huntington's disease is progressive, the provision of aids must be planned in advance and adapted regularly:
- Mobility & stability: due to increasing stiffness and coordination problems, active wheelchairs or, as the disease progresses, specialized wheelchairs with a tiltable seat are important. They offer safety and take the strain off the body.
- Safety during seizures:Epilepsy sensor mats for the bed and protective head helmets for daytime use protect against injury from falls or night-time convulsions.
- Augmentative and Alternative Communication (AAC): If speaking becomes more difficult, tablets with communication apps, symbol cards or eye control systems help to maintain communication with the family and in the social environment.
- Feeding aids: Special cutlery with thickened handles, non-slip pads and drinking aids support independence when eating. Mobile feeding pumps may be necessary in the case of severe swallowing disorders.
- Care & positioning: A care bed facilitates daily support. Special positioning cushions help to prevent contractures (joint stiffness), which can occur due to permanent muscle stiffness.
Learn more
You can find more helpful information about Huntington's disease here:
www.dhh-ev.de