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.
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.
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 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 by Dr Neil Basu, from the University of Aberdeen about the causes of fatigue in vasculitis patients that inspired the development of the new online resource.