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What You Need to Know About HD
You're probably far too familiar with Huntington disease to need this primer. But if new volunteers from outside the Huntington's community have joined your chapter or you're preparing to talk to the media or a local service club, keep the following points in mind as you explain what HD is all about.
Huntington disease (HD) is a fatal, hereditary brain disorder that affects both mind and body. It destroys cells in specific parts of the brain that help to control body movements, emotions, thinking and behaviour. As the brain cells die, people with Huntington's become less able to control movements, recall recent events, make decisions and control emotions.
Every child of a parent with HD has a 50% risk of inheriting the disease. If they do inherit the gene, symptoms usually begin showing up in their 30s, although they can appear in children as young as five, or in adults in their 70s. The symptoms get progressively worse through the course of the illness, leading to incapacitation and eventually to death.
It is estimated that 1 in 10,000 people has the disease. But Huntington's is not just someone else's disease. Closer to 1 in 1,000 people are touched by it either as someone at risk for the disease, a caregiver or other family member.
Huntington's can be diagnosed through neurological tests. And people at risk for HD (because one of their parents has the disease) can take a test to see if they have the gene.
Currently, there is no treatment or cure. However, scientists are making enormous strides in understanding HD. In 1993 they discovered the abnormal gene that causes the disease. Since then scientists have learned a tremendous amount about how the gene functions, how it causes HD symptoms, and how it leads to brain cell death. Very recently, Dr. Hayden in Vancouver made an enormous breakthrough, stopping the progression of HD in mice with the gene. With this powerful step, scientists are getting closer to slowing the symptoms of HD, and hopefully one day, stopping its progression all together.
The Need for Support
Huntington's robs people of the ability to control their movements. It chips away at their ability to reason, affects their emotions, and changes their personalities. Families need support - from their community, from health care professionals, and from trained Huntington Society of Canada Individual and Family Services staff.
Huntington's is often misunderstood and sometimes misdiagnosed. That's why more public awareness and better education for health care professionals are so important - so that families get that much-needed support.
We're confident that we're very close to finding a cure. Our understanding of HD has grown phenomenally over the past 15 years. Currently, several drugs are being tested that may slow down the disease. And the research that will lead to a cure for Huntington's will also bring scientists closer to a cure for other diseases like Alzheimer's and Parkinson's.
The Huntington Society of Canada is making a difference by supporting families, funding Huntington's research, and increasing awareness across the country.