What is Huntingtons Disease (HD)

(Information found at Huntington’s Disease Youth Organisation aka HDYO)

Everyone has the gene that causes Huntington’s disease (HD) it is expanded, but people who develop the disease have a longer version of the gene, the expansion of the gene is what causes it not to work properly and eventually causes people to develop the disease.

Huntington’s disease is known as a neurodegenerative disorder, this means Huntington’s is a disease which affects the nervous system and gradually gets worse over time. Huntington’s disease affects the cells of our brains and continues to cause damage as time progresses, which stops the brain and body from working as well as they used to.

Huntington’s can be spotted through the symptoms but it is not always easy to see them.

The three main types of symptoms are involuntary movements, cognitive and behavioural. Also described as mood, mind and movement.

Breaking down these three main symptoms:

Chorea which is a medical term used to describe the irregular movements people with Huntingtons suffer from, can cause patients to fall or drop things, look restless and appear fidgety.

Cognitive describes anything that requires intellectual activity, as Huntington’s progresses patients may have difficulty keeping track of things, making decisions or answering questions. Their ability to concentrate becomes more difficult.

Behaviour symptoms can cause patients with Huntington’s to feel depressed, anxious, lack of energy, angry or lose their temper over simple things. Behavioural symptoms are difficult as a person can say and do things they don’t mean.

Not everyone who gets a positive diagnosis of Huntington’s disease will develop all these symptoms. Everyone is different and the disease will affect each person differently. I know personally that my father and my grandmother were affected in different ways, similar but not the same.

Symptoms of Huntington’s disease can begin at any age, but most people with Huntington’s disease usually develop symptoms between 30 and 50 years of age. Huntington’s disease is caused by damage to the brain, particularly an area of the brain called the ‘basal ganglia’. The brain cells deteriorate over a long period, usually 15-20 years, and during this time the affected person slowly loses their abilities, such as walking, talking and eating. This happens gradually and the person with Huntington’s disease can remain reasonably well for some time – even after being diagnosed with symptoms.

I started #Imnotdrunk in 2016 as a way to share my story as a young carer living at risk of Huntingtons I have always said that I am not a scientist, but I have a voice.

I will use my voice for my dad, and anyone else in the community, speaking out about this disease and reducing the stigma so many generations faced.

I have seen a change! We do not need to hide anymore, we do not need to feel ashamed.

We the Huntington's Disease community are impacted by Huntington's Disease, but we are not the disease.

We have wonderful and amazing lives, we love and care for our family members who have the faulty gene, or we have inherited the disease.

Whether you are affected by HD, or know someone who is, let's raise awareness and help the scientists who are working tirelessly trying to find a treatment. We can help by speaking out and raising awareness for this Rare Genetic Condition.