The Psoriasis Association
In order to support people with Psoriasis, the Association runs a telephone helpline, email helpline and website. The enquiries are varied and can be complex reflected in the variations of not only types of Psoriasis but also severity of the condition, physically and psychologically.
The Psoriasis Association was founded in 1968 by Dr Dick Coles, Consultant Dermatologist at Northampton General Hospital. The Association has a head office in Northampton with five paid staff, and is managed by a board of trustees. The Psoriasis Association has three main aims:-
· To support people who have Psoriasis
· To raise awareness about Psoriasis
· To fund research into the causes, treatments and care of Psoriasis
The Psoriasis Association provides a wealth of information across all forms of media; leaflets which are available to Hospitals, Surgeries and Health Centres, titles include “What is Psoriasis”, “Scalp Psoriasis”, “Psoriasis in Children” and “Psoriatic Arthritis”, in addition to these there is a Parents’ Guide for parents of children with Psoriasis, a CD-ROM for children with Psoriasis and PsoTeen – a leaflet targeted specifically for teenagers with Psoriasis. For a full list of leaflets available, please contact the Association (details below).
In order to compliment the information presented in leaflet format, the Psoriasis Association runs a successful, informative website which is regularly updated. The Psoriasis Association website was visited 363 438 times between January 2007 and December 2008 (McAteer, 2009); in order to keep the website up to date, the Psoriasis Association not only regularly reviews the literature, but has also added a series of podcasts, from health professionals (GP, Dermatology Nurse and Dermatologist) to patients describing their own Psoriasis journey.
The patients range in ages from teenage to older adults and from people with Psoriasis to the partner and parent of people with the condition. Basra and Finlay (2007) coined the term the “Greater Patient” in order to describe the impact a skin disease can have on the immediate close social group of someone with a skin condition, and this series of podcasts allows Psoriasis patients to listen to other peoples’ thoughts and experiences. The podcasts will hopefully allow patients to realise that they are not alone in dealing with the complexities of Psoriasis.
Psoriasis is not uncommon in childhood (Siddha and Burden, 2007), in about one third of patients it starts in the first or second decade of life (Benoit and Hamm, 2007) - by recording the podcasts we know that having Psoriasis in childhood can be really hard work, not only in terms of applying treatments, but also with coping with other childrens’ reactions. Beattie and Lewis-Jones found that chronic skin diseases impair a child’s health-related quality of life measure as much as other chronic diseases of childhood. It is vital therefore those children with Psoriasis are treated successfully and sensitively, this can often be with topical treatments such as emollients, coal tar, dithranol or calcipotriol (Leman and Burden, 2003) but some may require more aggressive treatments such as UV therapy and even Acitretin or Methotrexate from a Dermatologist.
As with Psoriasis in adulthood, the most recent breakthroughs have been in the treatment of severe Psoriasis and the advent of the biologic agents, with Etanercept (Enbrel) receiving its paediatric license in 2008.
The parents and carers of children with Psoriasis require support and education regarding how to apply topical treatments, in addition to providing the support the child may need following hurtful comments made at school due to the visibility of Psoriasis.
Both teenagers in the podcasts report being unable to wear the clothes that they want to in the summer, and whilst one reports that her Psoriasis has not stopped her from doing anything, the other reports some hurtful bullying. “Psoriasis in children” is the fifth most searched term that brings visitors to the Psoriasis Association website (McAteer, 2009).
The Psoriasis Association can be contacted on 08456 76 00 76, mail@psoriasis-association.org.uk , www.psoriasis-association.org.uk
References
· Basra, M. K. A and Finlay, A. Y (2007) The family impact of skin diseases: the Greater Patient concept. British Journal of Dermatology, 156: 929-937
· Beattie, P. E and Lewis-Jones, M. S (2006) A comparative study of the impairment of quality of life in children with skin disease and children with other chronic childhood diseases. British Journal of Dermatology, 155: 145-151
· Benoit, S and Hamm, H (2007) Childhood psoriasis, 25 (6): 555-562
· McAteer, H (2009) Use of the Psoriasis Association Website. Dermatological Nursing, 8 (2): 62-65
· Siddha, S. K and Burden, A. D (2007) Recognition and treatment of psoriasis in children. Paediatrics and Child Health, 17 (10): 390-394