13th Annual Conference and AGM, May 2004
Report on the National Conference and AGM, Bristol
The Conference took place on Sunday May 23 at the spacious Jurys Hotel on the waterfront, and some 250 delegates were in attendance to hear the warm welcome extended by David Matthews, Chair of Western Group.
Ronnie Gourley, National Chairman and MC for the day, was soon in action and three medical speakers addressed the audience before lunch, with Barbara Grimster, National Secretary of LUPUS CANADA, giving an appreciated address on the good progress of the lupus structure in her country.
The Annual General Meeting then took place, when reports were offered by the Chairman, Treasurer and Director on the work of LUPUS UK in 2003 and hopes and ambitions for 2004. Questions from the floor were answered by the appropriate individual, and reports given to the Meeting are published elsewhere in this edition of 'News & Views'.
A relaxing luncheon was enjoyed by all, with the afternoon session being generously opened by Janet Dean MP, a National Patron of LUPUS UK and Chair of the effective and valued All-Party Parliamentary Group for Lupus which has progressed issues so much for lupus patients at Westminster.
A final clinical talk was followed by the ever-popular Medical Panel where all the speakers gave of their time to answer myriad questions put to them by the audience - always a highlight of the day, and for which the Chairman gave sincere thanks and appreciation to our doctor colleagues.
Norman Bowler, Patron of Western Group, kindly introduced the able and very amusing Fred Wedlock who entertained all with great humour and splendid sing-along music. Then followed the Conference Draw, with National Patron Diana Coupland selling masses of tickets and over £600 being raised for the charity from generous delegates.
Soon it was time for Ronnie's thanks to all involved in the success of the Conference, with especial reference to the excellent work of Western Group, our hosts for the weekend, who on the previous afternoon had laid on an enjoyable 'Meet and Greet' session at the venue for delegates.
We were exhorted to book for 'Newcastle 2005' and then the day ended over refreshments, chatting with lupus friends old, not so old, and new.
Short Reports on Addresses by the Doctors
'Managing the Complications of Lupus and its Treatment'
Dr Elizabeth Price, Consultant Rheumatologist, Great Western Hospital, Swindon
Dr Price has kindly submitted a full report, which will be found on pages 22-23. Her concluding statement is that as the management and survival of patients with SLE improves, there is an increasing need to manage the complications of long-term disease and the consequences of chronic drug usage.
'The Effects of Lupus on Dental Treatment'
Dr Jane Luker, Consultant in Dento-Maxillofacial Radiology, Bristol Dental Hospital
Apparently, lupus patients are 'medically-compromised' dental patients and create special problems for dentists. These may include bacterial infections possibly leading to endocarditis, mouth ulcers and a steroid crisis which might have serious outcome during dental treatment. The Sjogrens dry mouth condition is bad for the teeth as saliva works as part of disease control. If a patient suffers often with mouth ulcers and this has worsened recently, it may be due to anaemia and investigation is necessary.
Words of practical advice - never sleep with dentures in, do not use eg such as polo mints as non-sugar mints or gum are preferable and carbonated drinks are non-beneficial. Good dental hygiene is especially important for the lupus patient.
'Lupus - The History, Geography and Science'
Prof. David Isenberg, Professor of Rheumatology, University College Hospital, London
Professor Isenberg gave an entertaining talk across the three subject-matters, and in dealing with the genetics of lupus he used the analogy of a card deck where some people are dealt a lupus hand and the cards determine the symptoms. At the Triennial Lupus Congress, New York, in May Professor Isenberg had heard reports from a number of drug companies where new and effective therapies are on the table - he is very confident that inside a decade we shall be using these newer therapies to much better effect for the lupus patient than current medication.
The genetic component in lupus was outlined by Professor Isenberg where he explained that eg if one identical twin has lupus then the other has at least a 25% chance of having it. With non-identical twins, one with lupus, the other has an 8% chance of triggering the illness.
Professor Robin Brey, Medicine/Neurology, Univ. of Texas, San Antonio, Texas US
Professor Brey explained that 80% of lupus patients have a form of nervous system manifestation at some point in their illness, seizures and psychotic episodes being the most common. Some of these are directly from lupus and some are as a result of the body's response to the condition.
Nineteen variants of cerebral involvement have now been identified in lupus patients and headaches are regularly met (40% to 60% of patients). Early, accurate diagnosis is important and PET scans can be helpful. CNS lupus may be the sole symptom of lupus in some patients, though other symptoms can appear subsequently.
How to minimise possibilities of such involvement? Avoid sedating medicines, reduce steroid treatment wherever possible, work with your medical advisers to try to suppress flares and organ damage. Seek assistance if suffering from depression!
Sometimes using little aids can help if eg the short-term memory is poor - try checklists, diaries, sticky notelets (available from LUPUS UK !), a good big calendar. Turn off the tv or radio when conversing to give better concentration, avoid large groups of chatterers - do not drive whilst using a mobile phone!!
Our sincere appreciation to David Aldrich (Cambridgeshire Group) and Andy Taylor (North East Group) for their valued contributions towards the above summary.