The first on-line Help and Advice Centre for Vasculitis sufferers went live on Wednesday 10th April 2013 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 Patient 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 portal. 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 clinic 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: “The 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 support centre 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.”
Look out for the Patient Support Centre login box on our home page and on our Support page. If you are joining for the first time then you would select the Create An Account option and use a username and password that you will remember. The facility will create an account for you which will involve sending an email to the account you have stated on the account form. You will then a have access to the free support supplied exclusively for self management to Vasculitis patients.
This is the first self management support resource in the UK for Vasculitis. Join us today and together we can build ground breaking support that patients need.
