Vasculitis Awareness With Dr Hilary Jones

 In Awareness Projects, Education Projects, Uncategorised

Celebrity doctor, Dr. Hilary Jones, who regularly appears on ITV’s Daybreak, calls for the awareness of rare disease – vasculitis with the launch of a UK guidance DVD for GPs and patients to aid earlier vasculitis diagnosis on behalf of a UK charity – The Lauren Currie Twilight Foundation (LCTF) in July.

Vasculitis – an autoimmune incurable disease which inflames and destroys blood vessels, affects 3,000 people in the UK every year. A group of 15 uncommon conditions, it can affect any of the body’s systems at any stage of life resulting in an almost infinite range of symptoms which proves very difficult to diagnose. Added to that is the fact that the severity of these symptoms differ patient to patient with no known cause and currently no preventative medication.

The idea behind the LCTF DVD was born after the parents of Lauren Currie lost their daughter to vasculitis at the age of 15 due to the late diagnosis of the disease. After their lost battle which saw Lauren die 48 hours after diagnosis, they wanted to highlight to both the medical professional and the general public that earlier diagnosis will minimise organ damage in patients and will save lives.

The LCTF educational video – funded by money raised through The Lauren Currie Twilight Foundation, is called Joining Up the Dots, and is supported and presented by TV medical professional Dr. Hilary Jones. The release of this DVD is part of the LCTF core objectives to fund awareness, patient support, education and to research causes and improved treatments within Vasculitis.

Eight minutes long and featuring patient interviews, medical advice, triggers and risk factors, the LCTF DVD is set to be circulated to newly diagnosed vasculitis patients via the charity website, YouTube and requested postal copies, as well as distributed to all UK GPs and nursing staff. The primary objective is to raise significant awareness so cases are diagnosed earlier and organ damage is minimised along with long term complications for patients.

Lauren Currie presented with symptoms of this rare killer when she was 13 – 2 years before her death – but it wasn’t until 48 hours before Lauren died that medical staff could join up the dots and recognised vasculitis, which sadly was too late for Lauren.

Dr Hilary Jones – who first supported the charity at the beginning of the year when he held a webinar which looked at raising awareness and supporting vasculitis, became involved with the filming of the DVD after realising that early diagnosis can prevent mortality. He said:

“We need to be as aware of it as we are about meningitis. Meningitis is rare as well, in its bacterial forms, and yet we seem to have raised awareness about that and we need to do the same for vasculitis.”

Speaking about the DVD, Jones continues: “I wanted to become involved with LCTF to really get vasculitis into the forefront of the UK to prevent avoidable deaths, like the case of Lauren Currie and sadly so many others.

“We’ve come along way in the treatment of vasculitis but these advances still don’t put the condition in the same league as cancer, meningitis or coronary disease which are no longer the death sentences they once were.

“With the launch of the DVD and its distribution amongst the health profession the charity and I are hoping that we can get people thinking about the condition, increase early diagnosis and also reach out to those patients who are in a state of misdiagnosis.

Please help us in the fight against Vasculitis by distributing this DVD to your local GP or clinic.  Please show it to your friends and family on You Tube, Facebook and Twitter and help us to increase the awareness of Vasculitis.  Earlier diagnosis saves lives and can reduce significant damage to organs – please help spread the word.



0