Bid to restart Norfolk Lupus Group
People in Norwich with lupus and their families and carers are being invited to a meeting this weekend in a bid to restart a support group.
Norfolk Lupus Group, which had been running for about 20 years, had to be abandoned because of ill health among the committee members and, as no one else was able to take it on, this vital support group folded about 18 months ago.
A meeting is being held in room 12 at the education centre at the Norfolk and Norwich University Hospital, on Saturday, August 13, at 11am, when it is hoped that the support group can be revived.
Lupus is an autoimmune condition in which, for reasons not clearly understood, the immune system starts to attack healthy cells, tissues and organs.
As with other more common autoimmune conditions, such as rheumatoid arthritis, it is thought that a combination of genetic and evironmental factors are responsible for triggering the onset of lupus, which can affect people in different ways.
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Grandmother-of-six Fran Winstanley, the previous chairman of the group, has called the meeting and says that it is important that people who suffer from this dreadful illness should have the means to support each other.
The 68-year-old from Sheringham was diagnosed with lupus 15 years ago. She said great strides have been made in raising awareness and speeding up diagnosis in the past few years, and Lupus UK had helped to fund a speciaist lupus practitioner at the N&N.
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She said: 'Physically, it can be very debilitating. You feel at times that your body is shutting down. The biggest problem is that it can also affect the major organs. The kidneys in particular are a problem and a lot of our members have had to go on to dialysis.
'A lupus attack just floors me as if my body is shutting down.'
Mrs Winstanley said she would be prepared, if nominated and elected, to serve as chairman to help get the group started again, but she felt it was important to have new and younger members willing to take over in the long-term.
The group, part of Lupus UK, would aim to provide a listening ear to everybody who is affected by lupus, including families, carers and friends.
Consultants and a specialist practitioner often attend the group's meetings, which give patients a chance to meet other people affected by the condition.
Mrs Winstanley said the group, if restarted, would also be keen to find people without lupus who can help with fundraising to keep it running.
For more information contact Mrs Winstanley on 01263 822396.