MEP calls for increased awareness of dystonia disorder
Glenis Willmott explains why she is willing to take off her heels and 'Jump for Dystonia' to raise awareness about a little known brain disease.
What does the word dystonia conjure up to you? No, it is not an accession country - dystonia is a neurological movement disorder. It causes continuous muscle spasms which force affected parts of the body into abnormal postures or lead to twisting and repetitive movements.
Serious levels of pain are reported by large numbers of patients, most commonly in cervical and generalised dystonia, therefore pain management is an important aspect of treating the disease.
Dystonia is cloaked in mystery and can take years to diagnose. In most cases, the cause is unknown, and there is no cure.
"[Dystonia] causes continuous muscle spasms which force affected parts of the body into abnormal postures or lead to twisting and repetitive movements"
I recently met Monika Benson, who suffers from the affliction. She told me awareness lags far behind other movement disorders, even among medical professionals. Living near a Swedish university hospital, she is one of the luckier ones and was diagnosed in eight months. However, she also told me about Carl, who had pain in his neck and twisting muscles, but his doctor told him to go home and take aspirin. It was five years before his dystonia was diagnosed.
I believe raising awareness can help combat the stigma and isolation felt by people with dystonia, it can also be the key to earlier diagnosis and treatment. That is why I am supporting Dystonia Europe's 'Jump for Dystonia' photo call in Strasbourg on 25 and 26 November.
Very little is understood about dystonia. It is thought there are half a million people with the disease in Europe, but because of under-diagnosis, nobody knows. This is partly because dystonia is not revealed in brain imaging studies.
Dystonia, especially generalised dystonia, affects children. Amybel from the UK was diagnosed when she was young and by the time she was a teenager she couldn’t dress herself, cut up food, pour a cup of tea or tie her hair. When her speech started to slur, her confidence dropped and she found living with dystonia embarrassing.
"Very little is understood about dystonia, it is thought there are half a million people with the disease in Europe"
She opted for deep brain stimulation (DBS) at Kings College London. DBS is like a brain pacemaker, sending electrical impulses through implanted electrodes, to specific parts of the brain.
As the parliament’s rapporteur on the medical devices directive, I was delighted to learn that a medical device provided significant relief to Amybel and she is now living independently at university.
However, access to DBS therapy is not widely available across the EU. In Romania for example, it is not reimbursed and in Ireland people have to travel abroad for treatment. In some EU countries the number of operations is capped.
Monika Benson told me she looks forward to the day when she can tell people she has dystonia and they know what she is talking about.
That is one reason why I am urging my MEP colleagues to join me and have their 'Jump for Dystonia' photo taken in the in the "Swan Bar" area in the parliament Strasbourg session.
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