Help understanding juvenile idiopathic arthritis
Arthritis Care is the largest national voluntary organisation working with all people with arthritis operating over 600 local branches. It provides a helpline 'Arthritis News' - a bi-monthly magazine and a range of booklets including topics like exercise and benefits. It also operates a highly acclaimed self-management and personal development training programmes for different peer groups of people with arthritis. Useful publications include;-
- 'Benefits for beginners: a guide for people with arthritis'
- 'The Balanced Approach: a guide to medicines and complementary therapies' 'Talk about Pain: how to deal with the pain of arthritis'
- 'Reaching independence: a guide to living at home for people with arthritis'.
Young Arthritis Care is a sector of Arthritis Care and includes the services for people with arthritis aged 15 -20 years. Includes 'No Limits' magazine, 'The Source' a designated helpline for young people with arthritis, Yactive events and training opportunities that some attendees have described the course for young adults as life changing.
Contact: 18 Stephenson Way,
London, NW1 2HD
Telephone: 020 7380 6500
www.arthritiscare.org.uk
CHAT (Children Have Arthritis Too) Alliance is a collaborative effort by Arthritis Care, Children's Chronic Arthritis Association, and The Lady Hoare Trust produced two free A4 booklets. The most recent 'CHAT 2 parents - Arthritis in Teenagers' addresses in detail the challenges facing young people with arthritis. The earlier publication 'CHAT- a guide to Juvenile Idiopathic Arthritis' (1997) is now a little dated but still provides useful information. Both can be requested from any of the three parent organisations.
Children's Chronic Arthritis Association is a charity that campaigns to raise awareness of childhood arthritis and support families. CCAA provides highly commended annual family education weekends that combine learning more about arthritis, getting peer support and having fun. Network of regional telephone help for parents by parents, and publishes interesting but sometimes infrequent newsletter. New projects including facilitating computing support for children. Executive committee has representation from clinical providers and parents facilitating two-way sharing of knowledge and ideas.
Contact: Ground Floor Office,
Amber Gate,
City Walls Road,
Worcester, WR1 2AH
Telephone: 01905 745595
CCAA website is being redesigned and willsoon be available
American College of Rheumatology For brief fact sheet that summarises juvenile arthritis (written 2000)
www.rheumatology.org/public/factsheets/jra.asp
Arthritis Research Campaign, fifth largest charity in the U.K. concerned with raising funds for research into causes and treatment of arthritis and improving rheumatology services. Produces regular informative magazine 'Arthritis Today' which uses jargon free language to report current treatment issues, research findings and the experiences of people with arthritis. ARC produces wide variety of free practical educational booklets about different aspect of arthritis, including 'When a young person has arthritis' (a basic introduction) 'Arthritis in Teenagers' (for 13-20 year olds), 'Tim has arthritis' (very simple booklet to explain arthritis to young children), and fact sheets about different specific medicines, and roles of different professions in rheumatology.
Contact: ARC Trading Ltd.,
Brunel Drive,
Northern Road Industrial Estate,
Newark, Notts, NG 2DE
or order online via
www.arc.org.uk
Kids with Arthritis is an independent parent lead charity seeking to equip families of children with arthritis, and train service providers about the families' perspective. Publishes book and related website.
Contact: Choices,
PO Box 58,
Hove, East Sussex,
BN3 5WN
www.kidswitharthritis.org
The Lady Hoare Trust is an experienced registered charity that helps families of children (under 18 years) with arthritis or severe limb disabilities with practical, emotional and financial support. Network of specially trained fieldworkers who can make regular supporting home visits by arrangement. Experienced to consider and support the whole family especially during times of crises. Flexible consideration for small grants supported by fieldworkers recommendations.
Contact: 1st Floor,
89 Albert Embankment,
London SE1 7TP
Telephone: 020 7820 9989
www.ladyhoaretrust.org.uk
National Rheumatoid Arthritis Society - a new site and organisation lead by Ailsa Bosworth who has had arthritis for many years. Website has a page about experiences of juvenile idiopathic arthritis. Currently a registration page has to be completed before you can view the site.
Contact: Briarwood House,
11 College Avenue,
Maidenhead,
Berkshire, SL6 6AR
Telephone: 01628 670606
www.rheumatoid.org.uk
Pain Society produces a free information booklet for adults who live with chronic pain. Information can help parents understand their child's experience of pain better.
Contact: 9 Bedford Square,
London,
WC1B 3RA
Telephone: 020 7636 2750
SKIP - Reflex Sympathetic Dystrophy Supporting Kids in Pain.
Contact: via LAF Email: t.d.barton@swan.ac.uk