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Inspirational campaigner brings hope for others

In Hexham, not too far from our base here at CPUK, there lives a lady. Her name is Vicki Dillon. She has Parkinson’s disease.

She was diagnosed at a young age – just 35 – back in 2007.

Twelve years on, Vicki has just taken part in a pioneering drug trial and appeared on a national BBC television programme that has got the medical world talking.

You might be wondering about the relevance given that our focus here is on children and teenagers, amongst whom Parkinson’s is a rare condition indeed.

Trust us on this, it’s a pertinent topic for our blog. Please allow us to explain.

You see, whilst Parkinson’s doesn’t often impact upon the young, other severe neurological conditions do.

Chief amongst these is Tourette’s syndrome, something we’ve covered before on our blog here.

That such conditions are both under-researched and tough to treat means that they’re on our radar. That Vicki is campaigning to raise funds for further trials that could have a positive impact on neurological conditions other than Parkinson’s – including Tourette’s and the like – means that her sterling efforts have our full support.

“I’d like to raise £1m,” she told the Hexham Courant a little earlier this year. “I know that sounds ridiculous, but my belief is to aim high.”

It’s an admirable outlook, and one that has our backing. That around £4m is believed to be required to fund an extended trial of the treatment that featured in The Parkinson’s Drug Trial: A Miracle Cure? on BBC2 in March means sights must be set high and ambition harnessed. 

For the treatment in question, Vicki was one of just 42 patients worldwide to have a protein called glial cell derived neurotrophic factor (GDNF) delivered via catheters that were surgically implanted in her brain.

The initial results appeared to be mixed, with no significant difference recorded between the active treatment group and the patients receiving a placebo. Yet subsequent brain scan results have revealed some promising effects on damaged brain cells and, with crucial evidence of patient improvement at a low dose having been noted, further trials are required, using higher doses, in order to examine and understand the implications fully.

It’s important to underline here that this is research in its infancy, that nothing is certain and that there’s a great deal to be done before conclusions can be drawn.

Yet there is hope and there is promise – and not just for those with Parkinson’s.

In the UK, around 300,000 people have Tourette’s syndrome, an inherited neurological condition that affects one in 100 school-age children.

Some think it’s all about swearing and inappropriate behaviour, meaning sympathy, like understanding, tends to be in short supply.

There are countless myths and misconceptions, and for some, Tourette’s is seen as amusing. Trust us on this: for those in its grip, it’s no laughing matter.

Like to find out more about Tourette’s syndrome and the treatments and therapies available?

Please read our blog from last summer here, covering tics, ERP (Exposure and Response Therapy), HRT (Habit Reversal Therapy) and the co-existing conditions, including anxiety, OCD, ADHD, anger, depression and autism spectrum disorders that are often also present.

Tourette’s syndrome is very stigmatising, a condition that can be very disabling for children and young people and although, unlike Parkinson’s, things do tend to improve with age (from about 18 onwards, most typically), we must encourage anything that has the potential to find better scientific solutions, and anything that exists to recognise and support neurological disorders, no matter their name or who they impact upon.

It’s for this reason that we applaud Vicki, an inspiration to us all, and share this story, of her condition, of her response and of her hopes for a future that might, one day, enable her to say, ‘I used to have Parkinson’s disease’. From us all here, we wish her well.

Got a question about Tourette’s syndrome, another neurological condition or like to find out more about CPUK, tic therapies and the options available? You can always contact us here.

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