#HDAwarenessWeek: Three things you need to know

Because Huntington’s isn’t very well known, it’s still a misunderstood disease. This #HDAwarenessWeek, we’re sharing the facts to shine a light on Huntington’s and bring it out of the shadows.

Here are the three main things you need to know

1. ‘I’m not drunk’: Huntington’s symptoms

Huntington’s disease affects the body’s nervous system – the network of nerve tissues in the brain and spinal cord that coordinate what your body does. It can cause changes with movement, learning, speaking, thinking and feeling. If people don’t know about Huntington’s, they can mistake the person for appearing drunk. But it’s actually these physical, emotional and cognitive symptoms, which usually develop between the ages of 30 and 50 – though it can be much earlier or much later.

Learn more about Huntington’s symptoms

2. Toss of the coin: 50/50 chance of inheriting the gene that causes Huntington’s

Huntington’s is caused by a specific gene in the DNA which is faulty. This means it is a genetic (or inherited) disease. Every child conceived naturally to a parent with this faulty gene has a 50% chance of inheriting the gene causing the disease. For many people, this 50/50 chance can seem like the toss of a coin. There is a blood test that can tell if a person carries the faulty gene. But taking the test is a big decision which can have broad emotional and practical effects.

Learn more about the Huntington’s gene and genetic testing

3. Behind the mask: the emotional, cognitive and mental health effects of Huntington’s

Emotional and cognitive symptoms can cause people with Huntington’s to become irritable and aggressive, and appear apathetic or disinterested. It can affect short term memory, and depression and poor mental health is also common. These changes in their behaviour can seem like a mask covering up the individual underneath. When this is coupled with physical symptoms, such as problems with coordination, posture and changes in facial muscles, the combination of symptoms can be some of the most challenging for both the person with Huntington's and those around them to adjust to.    

Learn more about the emotional, cognitive and mental health symptoms of the ‘Huntington’s mask’


If you need help or support or would like more information about any aspect of Huntington’s disease, our Specialist HD Advisers can help – call 0151 331 5444 or email info@hda.org.uk