LIFESTYLE

What Is Vasculitis? Parents Launch Website To Explain Chronic Illness After Daughter's Death

11/04/2013 12:35 BST | Updated 15/04/2013 12:49 BST

The parents of a teenager who died from a rare disease have launched the first online resource for people living with the chronic illness.

Lauren Currie, of Kilmarnock, East Ayrshire, was 15 when she died from vasculitis in October 2010, a condition which was undiagnosed until her final visit to hospital.

She had been seen by doctors and consultants on various occasions with a number of health complaints in relation to her ears, nose and throat, and in her last days she began coughing excessively and was exhausted.

lauren currie

Lauren Currie and her parents

Doctors found blood in her lungs from hemorrhaged blood vessels and the damage caused proved fatal.

Lauren suffered from a type of vasculitis known as Wegener's Granulomatosis, now called Granulomatosis with Polyangiitis.

It is just one variant of the disease, which causes an inflammation of blood vessels and can affect the function of an organ to which it supplies blood.

It is a disease which is unheard of by many people and has symptoms that are common to other conditions.

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In the two and a half years since their daughter, and only child, died, Grant and Adrienne Currie have worked to raise awareness about the disease with the public but also within the medical profession through the Lauren Currie Twilight Foundation (LCTF) website.

This week, they have launched the Patient Advice Centre to provide support and information to patients with vasculitis and their families.

Mr Currie, 42, said: "I had to ask a lot of questions at the time. When we lost Lauren and returned home we started researching what our daughter had just died from and found very little information.

"Within a couple of days we decided to do something in her memory to help other people avoid what Lauren went through. This disease is off the radar a bit and needs to be more prominent for both medical staff and the public."

The website was set up to offer advice, support and information about the disease and a private group page was created for vasculitis patients and their families to "meet" and discuss their experiences to help break down any isolation they may feel.

Over the last two and a half years the Curries have met many people living with vasculitis and have learned more about the extent of support that was needed for sufferers.

Mr Currie explained that it was this first-hand experience and the discovery of a medical paper published about the causes of fatigue in vasculitis patients that inspired the development of the new online resource.

The research - carried out by Dr Neil Basu, from the University of Aberdeen - has shown that anxiety, depression, disturbed sleep and isolation contribute towards making vasculitis symptoms worse.

After eight months of development, the Patient Advice Centre has been launched with four new services provided by partner organisations and professionals to cover Scotland and rest of the UK.

Anxiety UK has been commissioned to run a dedicated anxiety helpline and produce guidance booklets on how to manage stress and anxiety while Nutrition and Diet Resource UK (NDR-UK) is to create booklets containing advice specific to vasculitis patients.

Hypnotherapist and relaxation therapist Andrew Johnson has made a relaxation therapy MP3 which can be downloaded for free and O2 Health is offering their Help at Hand service, which will raise the alarm should a patient hit their panic button or a sensor is triggered when they are in difficulty.

These services augment those already available on the website including discussion forums, fact sheets and informative videos via Vasculitis TV.

Mr Currie believes providing the multi-dimensional online resource is hugely important to patients and their families.

He said: "It is vital for them so that they do not suffer alone. Many would otherwise be alone because they have never had the opportunity to talk to other people with the disease.

"With vasculitis, patients look great on the outside but it is the inside where the problems are happening."

Peter Quinn, 59, of Whitburn, West Lothian, started to have symptoms of the disease in December 2011 when he had pain in his sinuses which spread to his ears and within eight weeks was virtually deaf.

In April 2012 he was diagnosed with vasculitis and in September last year suffered kidney failure.

Mr Quinn has found the LCTF website hugely helpful and is delighted to learn about the new portal.

He said: "It allays your fears. Vasculitis is an illness you can live with provided you have early diagnosis and are on medication.

"There are people living full, active lives with high-powered jobs, you can survive it and the website highlights that.

"Initially I was very weak and never saw myself getting better, but ever since the diagnosis I have been improving."

The Patient Advice Centre can be accessed online via the LCTF website.