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Rosalind Share

LUpus Patients Understanding and Support (LUPUS)


The unmet needs of individuals-affected-by-systemic lupus erythematosus, lupus variant conditions and Hughes (the antiphospholipid antibody) syndrome
2010. 164 S.
Verlag/Jahr: VDM VERLAG DR. MÜLLER 2010
ISBN: 3-639-30263-X (363930263X)
Neue ISBN: 978-3-639-30263-9 (9783639302639)

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Systemic Lupus Erythematosus (SLE) is an incurable autoimmune disease of uncertain aetiology. In 2000, LUpus Patients Understanding & Support (LUPUS), was established to provide free information for patients, carers and health professionals; and to provide free psychological support. The Internet is the chosen medium as it is relatively inexpensive and has the potential to reach the majority of people throughout the UK and elsewhere, irrespective of geographical location and physical disability. The book focuses on three aspects of the "unmet" needs of patients with SLE: information, understanding and psychological support. It is divided into three parts arguing that health professionals need to have an understanding of SLE as lupus patients are exquisitely sensitive to those who do not possess any knowledge, suggesting the way in which patients can feel isolated and alienated. The book is not about "e-therapy", or whether therapy is possible or desirable on the Internet. Rather, it is an exploratory study, using psychoanalytic thinking, into the attempt to address some of the unmet needs of patients with SLE and acknowledging the need for further research.
Ros was educated at Cambridge University where she read History and Educational Studies. She has a Masters in Education and a second Masters and Advanced Diploma in Psychotherapy. Ros is a qualified psychoanalytic psychotherapist and also the Director of LUpus Patients Understanding & Support (LUPUS), a non-profit organisation.