Dystonia Awareness Month 2024 | What is Dystonia?

In aid of Dystonia Awareness Month this September, we’d like to shine a spotlight on the neurological movement disorder.

In this article, we’ll discuss the symptoms, the causes, the types, the diagnosis and available treatments.

What is dystonia?

Thought to affect at least one hundred thousand people in the UK, it is a neurological movement disorder.

The condition results in uncontrolled and occasionally painful muscle movements, also known as spasms. It is normally a lifelong issue, but treatment can help relieve the symptoms.

Unfortunately, dystonia can affect any part of the body. This tends to include the eyelids, face, jaw, vocal cords, torso, limbs, hands, and feet. The condition will present differently depending on the part of the body affected and each type has a clinical name.

The condition affects all ages – it can appear at any stage in a person’s life. If it starts in adult life, it tends to present in one or two parts of the body. If the symptoms start in childhood, they will spread across multiple parts of the body and tend to be be more generalised.

Symptoms of dystonia

The symptoms are likely to include the following:

Uncontrollable muscle cramps and spasms
Parts of a person’s body twist into unusual positions. An example of this is when the neck is twisted to the side or the feet turn inwards
Shaking, or tremors
Uncontrollable blinking

It’s also worth noting that symptoms of dystonia might be continuous or come and go.

They are also likely to be triggered by things like stress or certain strenuous activities.

Causes of dystonia

The cause of dystonia is thought to be a problem with the part of the brain that controls our movement. Unfortunately, it’s not very often that there is a reason for this.

Occasionally, it can be due to the following:

An inherited genetic problem
The side effects of medication, such as antipsychotic and anti-sickness medicines
Parkinson’s disease
A stroke
Cerebral palsy
Multiple sclerosis

Types of dystonia

There are several types and they affect varying parts of the body.

The following are the main types:

Generalised – this affects most of the body
Myoclonus – this affects the arms, neck and torso
Cervical (torticollis) – this is the neck only
Blepharospasm – this affects the eyes
Laryngeal – this affects the voice box
Task-specific (writer’s cramp) – this affects the hands, arms and wrists
Oromandibular – this affects the lower face, mouth, tongue or jaw

You can find a full list of the types on Dystonia UK.

Diagnosis of dystonia

To be diagnosed, you’ll need to see your GP in the first instance – they will assess and refer you to a neurologist for tests if necessary.

Your neurologist will do the following to diagnose you with dystonia:

Ask you about your current symptoms
Ask about any other conditions you have
Check what medication you’re currently on
Ask if any of your family has dystonia
Test your blood and urine
Arrange a brain scan for you

Once diagnosed, your neurologist will work with you on a treatment plan specific to your type of dystonia.

Treatments available

Although dystonia is normally a lifelong condition, in most cases it is not life-limiting.

There is not a cure but there are many treatments available that can relieve the symptoms and scientists around the world are actively seeking research toward new therapies every single day.

The treatment a person receives is determined by the type and severity of their specific diagnosis. Your doctor will help you decide the best treatment for you, and it may even take a combination of several options to help with your symptoms.

The main treatments for dystonia tend to be the following:

Injections – this will be of a medicine called botulinum toxin directly into the affected muscles, which will need to be repeated around every three months
Medication – this will be to help relax the muscles in a larger part of your body, they are given as tablets or injections into a vein
Surgery – this is a type of surgery called deep brain stimulation
Physiotherapy
Occupational therapy

Thank you for reading

If you’re thinking about being involved in raising awareness this month, there are plenty of ways you can – click here to read more about how Dystonia UK are spreading the word.

Make sure to tag @DystoniaUK and #DystoniaAwarenessMonth on all the social media platforms you use and/or send your photos to [email protected] for Dystonia UK to use and share.

Please let us know what you think, and if you have had an experience of dystonia, via our social media channels – we would love to hear from you.

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