Silver Jubilee 199 0-2015 LUPUS UK - A Personal Retrospective by David Hopkins When I took on material' and my thanks go to all of them. period until she retired as Editor in 2002, Cheryl was to make this into the publication the position of Years of misery followed for Cheryl, we now know as 'News & Views,' which Secretary of including many months in hospital, though reaches thousands. Another remarkable LUPUS UK I was the arrival of son Daniel was a huge boon. achievement in her personal lupus story! handed a large Then, in 1976, Cheryl met Graham Hughes and heavy file; and, as she put it, 'a new chapter in my life In 1983, Cheryl had the pleasure of meeting this contained the began’. This was later to include a two- Diana, Princess of Wales, when the Princess minutes of all the and-a-half pound baby boy, Jonathan; he visited Dr Hughes and his team at meetings of eventually grew to be six feet three! But I Hammersmith Hospital. Princess Diana LUPUS UK. On digress. During her illness, Cheryl began to chatted informally to staff and then to looking through, I saw that the first wonder if there were others with this condition with whom she could communicate. meeting was held in late 1990 – So early in 1978 she contacted BBC Radio meaning that this year of 2015 marks London; this led to an interview and her our Silver Jubilee. The Trustees agreed appeal for others with lupus to contact her. that this milestone should not go That's where the story of 'lupus support' unmarked. It fitted with plans to review really begins, for little could Cheryl have our 'corporate' image and the realised what she had started. Letters and constitution. So 2015 marks an end to other contacts were received and Cheryl one chapter in our history and the realised she was not alone. 'I felt like beginning of the next phase of Robinson Crusoe finding Man Friday' was our growth. how she described it. But let's not jump too far ahead. In fact, I Gradually, Cheryl began to build up a feel it is important to look back and see group of lupus patients and supporters and what has brought us to the point at which a link was made with The British Rheumatism we now find ourselves. & Arthritis Association (now 'Arthritis Care'). On 1st December 1978, the inaugural In November 1990, LUPUS UK opened the meeting of the British SLE Aid Group doors of its National Office for the very (BSLEAG) was held in Langham Place, patients. The visit received extensive media first time. This was clearly an event of London, where the guest lecturer was Dr coverage, raising awareness about lupus great importance for all involved at the Hughes, and the Joint Presidents were amongst the general public. Cheryl's time and in subsequent years but it is Cheryl and Joyce Cross. In April 1979, the youngest son Jonathan was referred to in the important to realise that this was not first fundraising event, a Spring Fayre, media as a 'miracle baby' as Mum had something that just 'happened’. The creation raised £4,000 - quite a sum in those days! spent five years confined to a wheelchair. of the only national charitable organisation This was followed by a supper at the After presenting his bouquet, Jonathan also dedicated specifically to supporting lupus Westcliff Marina (financially successful but gave the Princess his bottle and teddy bear! patients was a development of something which attracted too many people!) and then Cheryl apologised to Princess Diana for the that had begun a dozen years earlier, a dinner/dance in April 1980. In 1981 the 'boisterous' behaviour; her reported when one woman, having been diagnosed Group became a registered charity. response was: 'He certainly looks a bundle with SLE, felt she needed to meet with, seek of fun. I understand perfectly – Prince support from and offer support to others in Some years later, it was felt that the next William is a mini-tornado!' A comment we a similar situation. step (and it was quite a big step!) was to may remember at a coronation of the future! form a charity that would be solely for Imagine the situation - it was 1971 and a lupus patients and their families, rather young woman had just enjoyed one of the than be linked with a charity with a much most important and happiest days of her broader base. After a series of meetings, life, her wedding, to Martin. On her LUPUS UK came into being in November 'honeymoon in the sun’, the symptoms she 1990 and in December 1995 became a had had for some time became far more registered charity. pronounced. Not the start to a 'new life' any of us would want. The young woman On Friday 5th April 1991, there was an was Cheryl Marcus and her father was GP official 'launch' of LUPUS UK with a Benjamin Green. His knowledge le d to her reception at the Royal Court Hotel, Sloane diagnosis (initially of discoid lupus, later of Square, London, hosted by the first systemic lupus) and the beginning of a long Chairman, Dr Graham Hughes, at the story of struggle and of achievement, one commencement of Lupus Awareness that is worthy of far more space than this Week 1991. article can offer. So I shall pick up on a From the outset, few points, based on correspondence, Cheryl had articles and photographs that Cheryl has produced a kindly shared with me. For these I am 'newsletter.' This immensely grateful, as I am for her time, started in 1979 help and patience. Reading through the as a simple material has given me hours of fascinated duplicated sheet, Nora Vanday fulfilled her dream to meet interest. This applies, too, to Professor sent out to 20 Diana. Diana unexpectedly visited the ward Graham Hughes, who shared with me some lupus meeting other lupus patients. of his very valuable time and his memories. penfriends. In 1994, Cheryl was nominated to attend Others have also added to my 'source Over the the Savoy Hotel as one of 500 women 1 recognised that year for their work for described as Europe's first 'dedicated' lupus collected went to LUPUS UK directly or was charity, the economy or the country. In clinic. This was opened by singing star part of local funds. Dr Hughes was elected 2005 she and Martin were invited to Elaine Paige, herself a lupus patient. Chairman and the meeting unanimously 'Number 10' by Cherie Booth, wife of then agreed that Cheryl Marcus be made a Life In 1983 Dr Hughes described 'antiphos - Member of LUPUS UK. pholipid syndrome', (APS) often called 'Hughes Syndrome'. (Not many people have When the Executive a health condition named after them!) met, in January, Many of our members will be only too 1991, it was aware of this condition and its effects. In confirmed that those 1991 Dr Hughes became Editor of a new working as volunteers journal, which published its first issue in at Head Office were November of that year. 'LUPUS' is the only Eric Howard (pictured) fully peer-reviewed international journal and three part-time devoted exclusively to lupus (and related staff, including Prime Minister Tony Blair, and in 2009 she disease) research. Professor Hughes Geraldine Leonard. again went to Number 10 for the LUPUS remains Editor. He is also on the board of Several others UK reception hosted by Sarah Brown. many journals, a member of the American worked from home. A constitution was Lupus Hall of Fame and Doctor Honoris of under consideration and officers were the Universities of Marseilles and Barcelona elected - Vice-Chairman: Ronnie Gourley, and Master of the American College of Treasurer: Martin Marcus, Secretary: Rheumatology. He and his team have many Doreen Milner. A programme for 'Lupus awards and honours. He currently heads Awareness Week' was considered for 6th- the private London Lupus Centre. 13th April. It was suggested that the AGM alternate on a three-yearly basis between Dr Hughes encouraged Cheryl to link with London, Birmingham and Glasgow/ other lupus patients and actively supported Edinburgh. (Later, in 1994, it was decided the establishment and growth of the to move the AGM around the country. BSLEAG. When this moved on to become LUPUS UK, Dr Hughes chaired the The next meeting was held in September, inaugural meeting of the National when there were representatives from: Committee of LUPUS UK at the Drury Lane Avon, Central England, East Midlands, Moat House on Saturday 10th November Essex, Fife/Lothian/Borders, Greater 1990. This is where the LUPUS UK story Manchester, Hampshire, Herts & Beds, Kent, truly begins. Merseyside, North East, Northern Ireland, On that afternoon, a group of more than South Wales, Strathclyde, South thirty came together. Amongst the group London/Surrey, West Midlands and A key figure in the pre-LUPUS UK history were Cheryl and Martin Marcus, Ronnie Yorkshire. This was the first 'representa - and through its development is Doctor, now Gourley and Peter Norton. There were tional' meeting of LUPUS UK. Gerald Ansell Professor, Graham Hughes. Professor apologies from wife Yvonne. At this became Secretary. A 'Young Group,' for 16 Hughes is a very important figure in the November meeting it was agreed that a to 30s, had been started in the March. Eric study and treatment of lupus. After training new unified Society be formed which Howard was given the courtesy title of in London and New York, in 1971 he set up combined research and welfare. It was Director.