The Irish Lupus Support Group was initiated in 1981 and following a number of informal meetings we held our first AGM in 1984. Two medical consultants were invited to speak at our meeting and the meeting was advertised in the national papers.
All were very surprised by the attendance which exceeded anything we had expected. At that meeting it was agreed that a support group should be formed.
Our first committee consisted of a Board of Management of nine people and that has proved a satisfactory number.
We have approximately 350 members but this figure fluctuates as members lapse when we have supplied their needs and new members join. It is thought that there are about 4000 Lupus sufferers countrywide.
We have three branch groups, Cork, Kerry and Meath. Two members from the Cork Branch, which is the largest branch, have recently been elected to the Board of Management.
We hold Dublin meetings, with a medical consultant as guest speaker, at least twice a year, and two or three meetings, in different locations but usually hosted by the Branch Groups. These meeting are usually attended by some members from the Board. We also have a social meeting in Dublin at Christmas. This is purely a Support Meeting, and at this people just talk to one another exchanging information and experience on Lupus. We hold our annual Raffle at this meeting.
Our Newsletter is published three or four times annually. This is always very well received. It gives information about happenings within the group and announces forthcoming events.
It also has articles, usually of a medical nature, which have appeared in other lupus magazines. Occassionally there is a Question and Answers section with which we are helped by one of our local medical consultants.
We have four Lupus publications all recently updated. About 5000 copies of each of these publications were printed, of which 4000 have already been distributed, to Health Boards, Public Health nurses, Health centres, National Rehabilitation Board and Libraries. They have also been handed out at our own Lupus Support meetings and some as a result of telephone enquiries,
The cost of these publications was mainly supported by the Health Education Bureau and the Health Promotion Unit, Department of Health.
Until very recently our office was in the home of our Secretary who singlehandly carried out most of the work. This was an unsatisfactory arrangement, particularly on her, as it also took up a lot of her time not to mention her living accommodation. I am now very glad to report the we have finally succeeded in finding an independent office. This is a good sized comfortable room in a Day Care Centre. It is well located, centre city and comparatively convenient for most people. We are still in the process of moving, and still have many details to sort out, but hope that once we are organised that we will be able to provide facilities for people to drop in for a chat, to read the latest literature or to avail of our lending library of books, videos and tapes. We hope initally to be able to man this office about three times a week with volunteers and all administrative work will be carried out from here.
We do not charge membership fees but do ask for donations. We also run a Christmas raffle which provides for administrative expenses. Funds are also raised by coffee mornings and sponsored runs. Publications have been supported by the Health Promotion Unit and the Health Education Bureau.
The National Social Services Board gives a small amount of money to cover expenses in connection with education and information.
We find it most difficult to get proper publicity though during this last year we were fortunate in that a television programme called Check-up, did a feature on Lupus. Professor Con Feighery, (who spoke to us at our ELEF meeting in Dublin) gave an overview on Lupus. Then three cases of Lupus patients were studied.
Finally the programme visited St. James' Hospital and showed blood being taken and then analysed.
There was a very good response to this programme and it particularly helped those who would not normally be able to attend our meetings.It highlighted the importance of videos.
E. L. E. F.
European Lupus Erythematosus Federation