The first on-line Help and Advice Patient Support Centre for Vasculitis* sufferers goes live this week following months of work by the Lauren Currie Twilight Foundation(LCTF), a charity set up two years ago by Adrienne and Grant Currie following the death of their daughter Lauren from Vasculitis.
The support centre on the charity’s website has been designed to help sufferers with the chronic and debilitating illness cope with anxiety, stress, and diet problems, and also offers them a way to talk to other sufferers on a free private members only “chat” facility.
The LCTF have brought in a range of specialist partners to assist in the delivery of the many services available on the centre. Anxiety UK have been commissioned to run a dedicated anxiety helpline for Vasculitis patients and guidance booklets on how to manage stress and anxiety.
Nutrition and Diet Resource UK (NDR-UK) have been commissioned to produce diet and nutrition booklets, as diet plays a huge part in the maintenance of this chronic illness. Hypnotherapist and Relaxation Therapist, Andrew Johnson is also recording an exclusive relaxation therapy MP3 for download from the portal for free. And O2 Health is offering their Help at Hand Service with full support to LCTF.
Extra services run by the LCTF, include Vasculitis TV, the guidance media service, Vasculitis factsheets and finally guidance webcasts that will be hosted quarterly with expert panels. These webcasts mean that sufferers can talk to experts at an online clinics from the comfort of your own home.
Grant Currie, Trustee of The Lauren Currie Twilight Foundation, says: “Vasculitis has little awareness within the medical community and the general public. It has very few resources available and at present there are limited support services available. Fear of the unknown is always extremely stressful, especially if this surrounds a chronic illness.
“This Patient Support Centre empowers patients and relatives to get the information and help they need to cope with their illness. If they become better informed, and are able to talk to other sufferers, they feel less isolated by their illness, and this helps with reducing stress and anxiety and helps with the self-management of the disease.”
Research into what causes fatigue in Vasculitis sufferers by Dr Neil Basu, from the University of Aberdeen has shown that anxiety, depression, disturbed sleep, lack of information, and isolation are all contributing factors to increasing the symptoms of Vasculitis and making sufferers feel worse.
Dr Hilary Jones, Patron of The Lauren Currie Twilight Foundation says: “Research has found that stress can cause this illness to flare. A flare is when the disease can become active and start attacking parts of the vascular system. Relaxation, diet and anxiety support are services we have sought to reduce patient stress and attempt to prevent related and unnecessary flaring.”
Grant Currie added: “We are proud of what LCTF has achieved for Vasculitis sufferers in the two years since we lost Lauren. Lauren has left a legacy for Vasculitis sufferers that has honoured her name and memory by investing in services that really makes a difference to sufferer’s lives.
“If Lauren had survived ICU then she would have needed services like this to help her manage the disease and she would have required the support of a charity like LCTF to support her through the trauma of diagnoses then living with a chronic and life threatening illness. When Lauren died we wanted to give other patients the support that we would have given Lauren and her charity allows us to do this.”
Peter Quinn, from Whitburn, is a supporter of the charity, but is also a chronic Vasculitis sufferer, he says: “This on-line Patient Support Centre will be life changing for a lot of Vasculitis sufferers, this illness is very isolating as it is very uncommon and not a lot of people have heard of it, even within the medical profession. This portal will open up new ways for sufferers to talk with each other, and gives us somewhere we can discuss problems and issues about the illness in a less public environment, this will help us feel less isolated and alone with the stresses of the illness.”
For further information or interviews with Grant and Adrienne or Peter contact Aura PR T: 0141 337 6712 07764 936 840
NOTE TO EDITORS
Vasculitis can occur as the main disease (primary Vasculitis), or as a complication of another disease (secondary Vasculitis). It can just affect one part of the body (localized Vasculitis) or multiple parts of the body (systemic Vasculitis).
There are almost 20 types of ‘primary systemic Vasculitis’ and they are classified as to whether they mainly affect small, medium sized or large blood vessels. Within the small vessel subgrouping the most common forms of Vasculitis are associated with a positive ANCA blood test (ANCA associated Vasculitis) and this subgroup comprises Granulomatosis with Polyangiitis (formerly Wegener’s Granulomatosis), Microscopic Polyangiitis and Eosinophilic Granulomatosis with Polyangiitis (Churg Strauss). The next most common types are those that affect large blood vessels, giant cell (temporal) arteritis and Takayasu’s arteritis.
Individual variants of Vasculitis are defined by the parts of the body affected (for example, Wegener’s typically affects the nose, lungs and kidneys), by features seen on tissue biopsy and by the pattern of blood test abnormalities. Direct imaging of blood vessels by X-rays or other tests helps in the diagnosis of medium and large vessel Vasculitis.