THE ISLE OF MAN - MANX LUPUS SUPPORT GROUP home page

SUPPORT INFORMATION

PURPOSE OF THE MANX LUPUS SUPPORT GROUP (MLSG): To provide (non-medical) advice and support to Lupus Sufferers on the Isle of Man and to help fund further research into Lupus.

MEMBERSHIP: Membership to the Manx Lupus Support Group is free. FOR FURTHER DETAILS and (non-medical) advice please contact Terrie on 825711 email: terrie@mcb.net, Elaine on 833329, or Wendy on 623070 email: gag@mcb.net

NEWSLETTER: We send a Newsletter out usually once a month. (If you give Wendy the month and date of your birthday, you will also receive a birthday card).

MLSG MEETINGS: Our meetings are held at Circa, just off level two at Chester street car park. Circa is a lovely warm and comfortable environment, with very friendly staff. Tea and coffee facilities are available, so you don’t have to skip lunch to attend, you can eat your sandwich at the same time.

Sometimes we arrange for a speaker, on a subject relevant to our problems, or anything which will benefit us or our family. FOR FURTHER DETAILS and (non-medical) advice please contact Terrie on 825711 email: terrie@mcb.net, Elaine on 833329, or Wendy on 623070 email: gag@mcb.net.

CIRCA (meeting place): A building situated just off level two, at Chester Street car park. Roger & Chris Waterworth and their staff and committee have been a terrific help to our members in the past years, they have always gone out of their way to help us in any way they can, the facilities provided for our meetings are second to none- easily assessable, clean, warm, comfortable and welcoming. Whenever you ring or call, Avis is always very happy to help you. They also hire out wheelchairs etc for a very small fee.

MLSG COMMITTEE: Our committee at the present time consists of-

Chairperson – Elaine Doyle

Treasurer – Terrie Watterson

Secretary – Wendy Gilmour.

We would be very happy to consider anyone joining our committee at our next AGM If you would like to put your name forward please do so. The committee would welcome any help offered; we are always looking for helpers and ideas for future events.

Chronically Sick and Disabled Persons Committee: Members of the Chronically Sick and Disabled Persons Committee include:

The Hon JA BROWN SHK (CHAIRMAN)

Mrs BRENDA CANNELL MHK (Vice Chair)

Mr MAURICE DAY.

Mrs KATH PARKINSON

Miss JULIE FRANCIS,
Mrs CAROLINE MALLON (SECRETARY)

They are a direct link to the Government bodies and Ministers and will assist us with problems within their capabilities. We meet, with all other Voluntary Organisations annually. The MLSG are represented at the annual meetings of this committee.

Lupus UK: is our rock, for support, advice and information. We have relied on and had their support since we started. We always try to encourage members of MLSG to become members of Lupus UK (although this is not a requirement) membership of Lupus UK costs only £8 per year and they provide a magazine called "News and Views" containing all the up to date information on research, new medications, planned events, and other regional groups news. See our link on our home page, and have a tour into their web site, perhaps have a natter in their chat room? News and Views carries a lot of very interesting subjects as most of you will already know as you receive regular copies. (If you have only just joined I do have back issues you can borrow, they make very interesting reading).

Lupus Foundation of America: We are in constant touch with them and they are kind enough to send us copies of their magazine entitled "Lupus News". This is a publication worth reading whether you are a Lupus sufferer or a family member. If you would like to see a copy please contact me as we have a few for lending out. Again if you fancy a visit to their web site click on the link - a trip worth taking!

Some of the subjects they have covered since the first issue of their well designed
"Lupus Now" magazine are:

First issue - Autumn 2003

A Practical Approach to Pain management.

Tai chi

Lupus in the lab

The Doctor patient relationship, and much more.

Second issue Spring 2004

Stem cell transplants

Lupus on the job

Case study etc etc

Third issue - Summer 2004

Osteoporosis and lupus

Men with lupus (“Don’t call it a women’s disease”)

Fourth issue Autumn 2004

Couples- communication is the key

Women at risk, how lupus affects your heart

Merseyside Lupus: We are also in regular contact with Pat Armstrong and Merseyside Lupus, it’s nice to have a chat and keep in touch. They really are a very nice bunch and work very hard for their group.