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WHAT is Huntington disease?
Huntington disease (HD) is an inherited brain disorder. About one in every 7,000 Canadians has HD, but one in every 1,000 are touched by HD whether at-risk, as a caregiver, family member or friend.
WHO Does HD Affect?
Huntington disease is a genetic disorder. The HD gene is dominant, which means that each child of a parent with HD has a 50% chance of inheriting the disease and is said to be “at-risk”. Males and females have the same risk of inheriting the disease and HD occurs in all races. Primarily, HD affects adults. Symptoms usually appear between the ages of 30 and 45, but the disease can first appear in children as young as 5, or in adults in their 70s.
SYMPTOMS of HD include:
- Emotional turmoil (depression, apathy, irritability, anxiety, obsessive behaviour)
- Cognitive loss (inability to focus, plan, recall or make decisions; impaired insight)
- Physical deterioration (weight loss, involuntary movements, diminished coordination, difficulty walking, talking, swallowing)
The disease leads to complete incapacitation and, eventually, death (generally due to other health complications).
At the moment there are no treatments that will slow down or stop the disease in humans. But hope for a meaningful treatment has never been more real. In recent years, basic research has dramatically increased our knowledge of HD. Various promising treatment strategies are now in the drug discovery pipeline.
WHAT the Huntington Society of Canada offers:
The HSC Family Services Program provides support to individuals, families, and professionals as they face the progressive course of Huntington disease (HD). We also support caregivers and those living at-risk. The Family Services Program strives to maximize quality of life and to assist with meeting urgent needs.
Services are provided through a Director of Family Services, Resource Centre Directors, and Family Services Workers. The Director of Family Services manages the program across Canada. Resource Centre Directors are full or part-time permanent staff that provide a range of services within large geographic regions that include highly populated areas. Family Service Workers are contract staff that provide priority services of the program within specific geographical areas.
The Family Services program includes:
- Direct support services
- Education and support
- Local community development
- Support to HSC’s national advocacy efforts
Like its adult counterpart, juvenile HD remains incurable, and there are no treatments which can stop or slow the course of the disease. Dramatic advances in research have given rise to tremendous optimism that new forms of therapy will soon be in sight.
Download the Juvenile HD booklet.