A Dystonia sufferer from Caernarfon is calling for a meeting with Betsi Cadwaladr chiefs in order to discuss the lack of services in north Wales for those who live with this complex neurological condition. Plaid Cymru AM for Arfon Sian Gwenllian has teamed up with Ann Pierce-Jones from Caernarfon who was diagnosed with condition 4 years ago to raise awareness of this debilitating neurological condition that affects about 70,000 people in the UK.
“The numbers of those living with this condition are not far short of those with MS and Motor Neurone Disease, but we know far more about those conditions than we do about Dystonia,” said Sian Gwenllian. “I have 11 diagnosed cases in my constituency with many more quite possibly unaware that they are developing it or waiting for a diagnosis.”
Dystonia is a neurological condition that can be genetic and it causes physical tremors and muscle spasms meaning that sufferers have no control over their body’s movements. The muscles can become contorted and in some cases the neck or torso can twist and remain twisted throughout the sufferer’s life.
Ann Pierce-Jones, 55, from Caernarfon started experiencing tremors aged 29 and suffers with spasms in her neck with twisting of the head and shoulder to the left.
“It’s a very isolating condition,” says Ann Pierce. “Apart from one voluntary group in Llandudno there is very little support locally for those of us who have this condition, and very little understanding of what it means to try and live with it. The fatigue and pain that come with the condition are so difficult to manage, and I have some days and weeks when I struggle to leave the house.”
Ann Pierce-Jones travels back and forth to Walton in Liverpool for the specialist attention she needs, but feels strongly that there could be more support offered closer to home.
“I appreciate that the specialist care is in Walton, but there are services that could be offered locally, like counselling, neuro-physiotherapy and the symptom-controlling treatments like Botox that relaxes the muscle. Botox injections available locally but not specialised and general only. Dystonia muscle spasms and head tremors are complicated and need correct botox injecting to have best results. Service for botox in Walton running at 6 months between treatment when it should be 3 months between treatment.”
Said Sian Gwenllian, “People like Ann living with Dystonia often feel vulnerable, isolated and afraid, and those feelings are very counterproductive when they need to be conserving energy and looking after their wellbeing in order to fight the symptoms of this condition. I would like to see a greater awareness of the condition and what it means for the day to day lives of the people who have it, and I would like to see more support locally around the condition so that sufferers don’t feel so alone. Ann has been given a date for DBS (deep brain surgery) of 14 Nov and will undergo a 5 hour surgical brain procedure. The poor services locally, the delays in regular botox treatment and pressure from an employment and financial perspective meant that Ann felt that this was her best and last option moving forwards.”