This week, June 2nd to June 8th, is Huntington's Disease Awareness Week. Affecting both men and women, it is a hereditary disorder of the central nervous system. This means that some of the nerve cells in the brain are damaged, causing deterioration and gradual loss of function in certain areas of the brain.
Brain cells, once dead, cannot be brought back to functionality. However, there is new growth of nerve cells, but the problem is this neurodegeneration outpaces neuron growth. Every new neuron created is like a ticking bomb, made up of the same genetic mistake that caused the dead neuron to give out in the first place. This neurodegeneration can affect movement, cognition (perception, awareness, thinking, judgement), and behaviour. Unfortunately, there is no cure nor can the disease be slowed down. It lasts usually for 10 to 20 years, until the sufferer eventually dies. Death will not come directly from the disease itself, rather, it will come from a heart failure, pneumonia, or some other secondary cause.
Research carried out in the UK in 2012 claims 12 people per 100,000 are affected by Huntington’s disease. What can these 12, and their families do, when coping with this disease? First and foremost, it’s important to receive the right diagnosis. Many people suffering from Huntington's disease get misdiagnosed with schizophrenia, a much more common disease. Some times their early symptoms may be dismissed as 'old age'. The difference is however, that Huntington's disease usually develops much later in adulthood whereas schizophrenia normally develops during the late teens. A 58 year old developing schizophrenia is unlikely.
Symptoms include personality change, psychosis, abnormal movements, depression and anxiety. People try and cover up the fact that they're losing control of movements; i.e. their hand moves mid conversation and then reaches for the coffee mug, in an attempt to pretend they always meant to reach for that coffee mug.
The basis of treatment is to try to control symptoms and maximise quality of life It is important to remain as active as possible. Depending on what the movement disorder looks like, physiotherapy could be used. Some, mostly men, may become sexually disinhibited and aggressive. Again, medication can be used to treat these symptoms.
The last thing that must be done, of which it is of the utmost importance, is maximising the quality of life. What do I mean by that? This Sunday boasts good weather, so go out to the local park or enjoy ice cream in your garden.
People suffering from Huntington’s disease are like you and me, and we all deserve to be treated well and loved.