The Danish Dystonia Association’s Event 3
“Congratulations on Your Diagnosis – Now You’re on Your Own”
A discussion between Chair Pia Vejle and Vice-Chair Sanne Rasmussen
About Folkemødet
Folkemødet – also known in English as the Danish Democracy Festival or the People’s Meeting – is Denmark’s largest annual festival of democracy. It takes place on the island of Bornholm and brings together politicians, patient organisations, businesses, professionals, journalists and members of the public for open debates about society, health, welfare and politics.
In 2026, the Danish Dystonia Association participated in Folkemødet to raise awareness of dystonia and to bring patients’ experiences directly into the public and political debate.
When Patients Become Project Managers of Their Own Illness
At Folkemødet 2026, the Danish Dystonia Association focused on an experience that far too many people with dystonia will recognise: the feeling of being left alone once the diagnosis has finally been made.
The discussion was entitled “Congratulations on Your Diagnosis – Now You’re on Your Own” and took the form of a conversation between Chair Pia Vejle and Vice-Chair Sanne Rasmussen.
Unfortunately, the title reflects a very real experience. For many people with dystonia, receiving a diagnosis is not the end of a long struggle, but the beginning of a new one.
Once a name has finally been given to the symptoms, it should mark the beginning of a safe, coordinated and coherent treatment pathway. Instead, many patients find that they have to search for information themselves, coordinate between their general practitioner, neurologist, municipality, job centre, physiotherapist and workplace, and repeatedly explain what dystonia is.
It was precisely this kind of “system noise” that the discussion addressed.
Two Personal Stories of Living with Dystonia
Pia Vejle began by describing her own journey towards a diagnosis.
Her dystonia first appeared during a drive in rainy weather. The windscreen wipers were moving from side to side – and so was her head.
When she contacted her doctor, the symptoms were not immediately recognised. Fortunately, she later met a chiropractor who had seen dystonia before and referred her further within the healthcare system.
Pia has dystonia in her neck, known as cervical dystonia. This means that the muscles in the neck contract involuntarily, causing the head to turn, jerk or become fixed in a tense position.
Sanne Rasmussen then spoke about her own condition, which developed following an accident. Her dystonia also began in the neck but has since progressed to generalised dystonia.
The symptoms first appeared in her neck, then in her right leg, followed by her left leg, and now also affect her left hand. Her story clearly demonstrates how differently dystonia can develop from one person to another.
With a combination of seriousness and humour, Pia and Sanne described how they sometimes have to plan where they stand in relation to each other because their heads turn in opposite directions.
Humour was used as a way of making the condition easier to understand – not to minimise its seriousness, but to show that living with dystonia also requires creativity and the ability to laugh at oneself.
What Is Dystonia?
Dystonia is a neurological movement disorder in which the brain sends incorrect signals to the muscles. The muscles tense, contract or produce involuntary movements.
Dystonia can affect many different parts of the body.
For some people, it affects the neck. For others, it may affect the eyes, causing the eyelids to close involuntarily. It can also affect the voice, jaw, hands, legs or several areas of the body at the same time.
Some people develop writer’s cramp, where the hand can no longer be controlled normally when writing. Others gradually lose their voice because the vocal cords are affected.
Dystonia is therefore not one simple condition that looks the same in every patient. It may be visible or invisible. It can be mild, moderate or severely disabling, and it can affect a person’s working life, family life, social life and overall quality of life.
Pia and Sanne explained that dystonia often causes pain – not necessarily like an ordinary cramp, but like an overactive muscle that continues to contract and never fully relaxes.
When the body is constantly held in an abnormal position, other areas are also affected. The shoulders, back, legs and head may become overloaded because the body is continuously trying to compensate.
As Sanne described it, the muscles can feel as though they are never given a break. Even when the body is exhausted, the legs may continue moving and working after she lies down in bed.
It is not something that can simply be switched off.
Treatment – and Waiting Times That Cost Quality of Life
Treatment for dystonia varies from one patient to another.
Some patients receive oral medication, but many are treated with botulinum toxin, which is injected into the overactive muscles. The treatment often needs to be repeated approximately every three months.
For some patients with severe dystonia, DBS – Deep Brain Stimulation – may be considered. This involves surgically implanting electrodes in the brain. A small stimulator sends electrical signals that can reduce involuntary movements.
However, DBS is currently used for relatively few people with dystonia in Denmark and is far more commonly used for conditions such as Parkinson’s disease.
Waiting times were a recurring theme throughout the discussion.
Pia and Sanne described the frustration experienced by many patients when they face long delays in both diagnosis and treatment. In some parts of Denmark, waiting times can be extremely long, with serious consequences for patients.
When treatment is not provided in time, symptoms may worsen. Pain may increase. The ability to work may be threatened. Social activities may have to be abandoned, and some patients withdraw from their communities because they no longer have the energy to explain why their body behaves differently.
As highlighted during the discussion, if a person with diabetes were told to manage with a small amount of medication and return in seven years, everyone would immediately recognise the problem.
Long waiting times can also have devastating consequences for people with dystonia. However, because the condition is much less widely known, these consequences are often not taken seriously enough.
Having to Explain Yourself Again and Again
One of the strongest themes of the discussion was the constant need to explain the condition.
First to the general practitioner. Then to the specialist. Then at the workplace. Then to the municipality and the job centre – and often also to family members, friends and strangers.
Dystonia is not always visible. A person may appear completely healthy while experiencing severe pain, involuntary movements or profound exhaustion.
Pia described an early experience from her work in the association. She once told a person being assessed for DBS that they appeared to be doing quite well. She later discovered that what could not be seen were the person’s toes, which were constantly held in a painful, cramp-like position.
The experience stayed with her.
Dystonia can be hidden beneath clothing, inside shoes, in a person’s voice, in their exhaustion or in pain that cannot be seen from the outside.
Sanne also described how the condition can be misunderstood in social situations.
If she sits with her hand against her head to support her neck, others may think she is being rude or uninterested. If her head turns towards another person, it may appear as though she is staring. If she has to cancel an activity, it may be interpreted as a lack of interest, even though the real reason is pain, exhaustion or sensory overload.
Having to provide these explanations constantly is exhausting – not only physically, but mentally as well.
Sensory Tricks – Small Actions That Can Help
Pia and Sanne also spoke about sensory tricks.
These are small actions that some people with dystonia use to reduce their symptoms temporarily. A person may place a hand on their cheek, chin or neck, wear a scarf, support their head or provide the body with another form of sensory input that helps the muscles find a little more calm.
For Pia, a scarf can provide warmth while also helping her guide and manage the movements of her head. For others, placing a hand on the cheek or neck may offer temporary relief.
Sensory tricks do not remove the condition, but they can make daily life slightly more manageable.
They are also a good example of how much patients have to learn for themselves along the way. Many people develop their own strategies because they have no other choice.
The Patient Association as a Safety Net
An important point raised during the discussion was that the Danish Dystonia Association often becomes the place patients turn to when the healthcare and welfare systems fail to connect.
The association provides information, guidance, networks and understanding.
Pia explained that, in recent years, the association has devoted considerable effort to producing information materials that hospitals can give to newly diagnosed patients. The aim is to ensure that people with dystonia are not left completely alone with a diagnosis they may never have heard of before.
However, this also raises the question of how much responsibility a small, voluntary patient association should be expected to carry.
Should a patient association be responsible for producing information materials, applying for funding, educating healthcare professionals, organising courses for physiotherapists and helping patients understand their rights?
Or should these tasks be a more natural part of the healthcare system’s responsibilities?
The Danish Dystonia Association carries out this work because the need exists. However, the workload is considerable, and the organisation is largely driven by volunteers.
Working Life, Municipalities and Job Centres
The discussion also addressed working life.
For many people with dystonia, it is not only their treatment that is difficult to coordinate. Communication with employers, municipalities and job centres can also be challenging.
Pia and Sanne discussed, among other things, Section 56 agreements. These agreements can be an important option in Denmark for people with chronic illnesses who experience increased sickness absence or need time off for treatment. Under the arrangement, an employer may receive reimbursement from the municipality from the employee’s first day of absence when the absence is related to the chronic condition.
They also discussed free-of-charge physiotherapy, which is a vital part of maintaining physical function for many people with dystonia.
Pia described contacting the job centre because she could feel that her ability to work was under increasing pressure. Instead of being met with understanding, she encountered a system focused on red boxes in an assessment form.
In practice, the message was that she was not yet ill enough.
This is an experience that many patients with invisible or complex conditions will recognise. They ask for help before everything collapses, but the system often responds only after the damage has been done.
The discussion therefore called for greater responsiveness and understanding.
Not special treatment, but coordination.
Not pity, but knowledge.
Not mistrust, but a genuine assessment of how the condition affects daily life.
Physiotherapy Requires Knowledge of Dystonia
Physiotherapy was also highlighted as an important part of treatment for many people with dystonia.
However, it was emphasised that the type of treatment matters. Ordinary massage or inappropriate treatment may, in some cases, worsen symptoms.
The Danish Dystonia Association has therefore worked to improve physiotherapists’ knowledge of dystonia, so that more professionals understand how the condition affects the body and how patients can best be supported.
A Rare Condition Should Not Have a Quiet Voice
The Danish Dystonia Association participated in Folkemødet to increase visibility.
Dystonia is a rare condition, but that must not mean that the voices of patients are also small.
Pia and Sanne made it clear that the association cannot solve the problems of the healthcare system. However, it can bring patients’ experiences to the attention of politicians, hospitals, healthcare professionals and partner organisations.
The association can highlight where the system fails to connect. It can draw attention to waiting times, lack of knowledge, inadequate information and the need for greater coordination.
The aim is better quality of life, less “system noise” and a more humane pathway for people living with dystonia.
Three Wishes for the Future
Towards the end of the discussion, Pia and Sanne were asked what they would most like to change if they could make an immediate difference.
Their answer was clear.
First, they called for faster diagnosis and treatment. Patients should not have to wait for years to receive help for a condition that affects every part of their lives.
Second, they called for greater patient involvement. Patient associations and patients themselves hold valuable knowledge about everyday life with dystonia. This knowledge should be used more actively within the healthcare system, by municipalities and in the development of services.
Third, they called for greater understanding in workplaces, job centres and municipalities.
People with dystonia should not have to collapse before they are taken seriously. They should be listened to earlier, supported earlier and offered solutions while they still have resources and strength remaining.
Why Do We Do It?
The discussion ended with a powerful answer to the question of why the Danish Dystonia Association devotes so many voluntary hours to awareness-raising, events, information materials, dialogue and political advocacy.
The association does this because its board members know what it feels like to receive a diagnosis, to feel frightened and frustrated, and to be left without answers.
They know the difference it makes when someone listens.
And they know that a patient community can be the first place where a person finally feels truly understood.
