HISTORY OF LUPUS UK

Written by Cheryl Marcus, founder of Lupus UK.

Professor Hughes certainly made me look deep into my past when he asked me to write about “the History of Lupus UK”.

How is it possible that when I started the group in 1979 there was no computer available to me, no e-mails, no mobile phones and certainly no home printers. 

To most of you I am sure that this must have seemed like the dark ages, but to me the time has just flown by and in the most part those changes that have taken place are unbelievably wonderful.

To explain the history I have to go back nearly 50 years, when I was a young woman recently diagnosed with Lupus and had been an in-patient at the Old London Hospital on and off for at least a year.

My late father, a GP had researched and found out about a young British doctor, Graham Hughes, who had specialised in the treatment of Lupus in the USA and was now at Hammersmith Hospital.

I first met him in 1976 and ‘a new chapter in my life’ began.

His treatment gradually changed my life through using less steroids and new drug therapy, as well as intense physiotherapy to enable me to walk again. During this time I spoke with him about how alone and scared I felt and that I wished I could just meet someone else with Lupus.

He quite rightly told me to do something about it!

So early in 1978, with help from a very good friend, I contacted Chris Mohr who produced a radio show called “In Town” on BBC Radio London. In February 1978 he asked if anyone out there has Systemic Lupus Erythematosus and would like to be in contact with fellow sufferers. After a handful of replies they asked if I would like to record a message from my hospital bed, which they would broadcast on their own and other local stations, effectively putting the message out nationally. This certainly got the ball rolling and from this small beginning grew LUPUS UK.

These events certainly changed my life for the better, not just communicating with other lupus sufferers, but in my positivity to get better as so many others were relying on my help. Many who corresponded were, like me, in hospital and feeling very unwell, plus feeling so alone. It is worth mentioning that in the 1970s lupus was referred to as S.L.E., and the doctors reading their large medical text books would see it referred to as a “fatal disease”. The treatment had been pretty limited to massive doses of steroids and hoping for a miracle. Patients like me were often put on 100 mg prednisolone daily as nothing else was helping. This caused me to lose my hair, be massively overweight with an incredibly round face, and continually facing infections and operations. My husband Martin and my parents realised how difficult it was running two homes while I was in hospital so much, and so they sold the respective homes and bought one large family home which was to make life so much easier, especially as they were bringing up my baby son Daniel. Thankfully in later years we were able to return to individual living, and my wonderful parents had the chance to enjoy their later years in much easier circumstances. 

Returning to the start of Lupus UK, (which was then called the British SLE Aid Group,) and how suddenly it grew and took over my life. As more and more lupus sufferers contacted me it felt like I was Robinson Crusoe finding Man Friday, but I could no longer cope with replying to the letters or knowing the answer to the many questions that were asked. I contacted the British Rheumatism and Arthritis Association and asked if our small group could possibly come under their umbrella. They accepted us and this proved such a relief for me and they gave us much needed support, and publicised the condition of lupus, which was relatively unknown at that time.

On 1st. December 1978 the inaugural meeting of the British SLE Aid Group, as part of the BRA took place at Langham Place, London, where the guest lecturer was Professor Hughes. We embarked on many fund raising efforts which enabled us to fund, albeit in a small way, the research work on lupus being carried out at Hammersmith Hospital.

A major highlight of all our lives took place in 1983 when Diana, Princess of Wales visited Professor Hughes and his team at the hospital in support of the Lupus Research and Treatment Unit. Our own toddler Jonathan, himself a miracle baby (born 11 weeks early and weighing one and half pounds) presented her with a bouquet and made it so special for us. She, to our delight, asked to visit the lupus ward where she chatted easily with the in- patients. She brought happiness to so many that day. This received considerable National coverage, raising the awareness of lupus and the existence of our group among the general public.  

The relationship with the BRA continued for some time, but this organisation was primarily for those with arthritis and rheumatism and lupus was very much small print, therefore my aim to have a group just for those with lupus disease remained high on my wish list.  To this end many meetings, plus many headaches and then finally the decision was made. We took the very brave step to start a group specifically for lupus sufferers and their families, medics and interested parties. 

It came into being in November 1990 and was named Lupus UK. We had just one room within the company my husband worked for in Romford, Essex, with a great director, Eric Howard, who worked on a voluntary basis, and ably assisted by Geraldine Leonard, who has only recently retired after 25 years’ service.

The official launch took place on 5th. April 1991 at a reception at the Royal Court Hotel, Sloane Square, hosted by Professor Hughes who was appointed Chairman. This coincided with the commencement of Lupus Awareness Week in 1991.

We advertised the existence of the group to hospitals, health forums and not only here, but in Europe and America. Indeed everywhere we could announce the existence of the Charity!

To have our own headed paper and own charity name and status was so amazing and our small band of members grew and grew. Our magazine News and Views became an increasingly important tool to give medical information, arrange meet ups regionally, to advise on lifestyle and care and very importantly at this stage, as a way of advertising fund raising activities.  

I was putting together the magazine at home, but it was incredibly labour intensive and my local printer was not happy receiving my copy on typed sheets and needed it on a disc. I had no idea about computers then and was absolutely petrified about taking that necessary step to learn how to use one. However, after many sleepless nights I realised it had to be and I joined a computer class. I struggled with great difficulty, to learn enough to be able to continue producing the magazine by supplying the printer with the documentation in the format needed. Thankfully, eventually I grasped it and my life then took on another leap, being able to use a computer, use emails, use a printer and remain in control of News and Views. 

I had joined the modern age and my earlier young career as a beautician/anatomy teacher was well in the past! 

Meanwhile LUPUS UK grew stronger and stronger and it was soon evident that we would need dedicated offices to handle the growing membership.

In December 1995 Lupus UK became a registered Charity with its own group of Trustees. We found serviced offices in Romford, Essex and gradually our staff grew and we published leaflets on every aspect of lupus, arranged conferences, organised medical speakers to address patients and young and interested doctors and also lupus families. We set up Regional Contact Groups and encouraged members to get together and meet others of a like mind.

Over the years since its inception, Lupus UK and its predecessor the British SLE Aid Group has raised millions of pounds to not only fund research projects, but also provide specialist Lupus Nurses in many hospitals and give information on all aspects of lupus to the medical profession and the general public.

The understanding and treatment of lupus has improved, partly due to the Group, but also to the internet, with more young Doctors being informed and kept up to date. Our deputy CEO Paul Howard is now our computer wizard and keeps us up to date in all things technical.

Lupus patients need never feel alone, there is always someone available to talk with, or correspond with and provide advice if needed.

I am delighted that over 40 years since that Radio London broadcast the initial reason for my starting the Group is still considered important and a major part of the reason for Lupus UK’s existence. I am also very proud to say that LUPUS UK Nurses and Research Grants over the period of its existence totalled £9.75m at the end of 2019. We raise funds through marathons, coffee mornings, donations, barn dances and in many other ways. My gratitude to all those who participate in fund raising, and this makes me eternally thankful and am so pleased that their efforts are put to such good use.

The News & Views Magazine started with issue Number 1 in May 1979, consisting of just 12 pages, it continues, albeit it is now up to issue Number 120 with 46 professionally produced pages covering all aspects of Lupus, fund raising, grants made, latest treatments and many other informative articles. In 2002, I felt that the magazine needed to be in younger and more professional hands, and so I was very pleased that our Head Office kindly took possession of all the back copies and brought the magazine into the 2000s.  Christine Watkins and the wonderful staff at Head Office do a wonderful job and it is really like seeing my baby grow up in a very healthy and happy way. 

The Lupus UK team, led by CEO Chris Maker and ably assisted by Paul Howard, do a remarkable job and I am forever grateful that they keep us moving forward without forgetting the core value of friendship. 

There are too many names to mention on the lupus journey, but Yvonne Norton, Joyce Cross, Susan Knowland, Paulette Pelosi were early supportive members and Eric Howard, Brian Hanner and Chris Maker have been brilliant Directors.

On a personal note I am now 70 years old and thanks to Professor Hughes and many other brilliant Consultants I am still able to enjoy life. Many of these doctors I have seen from being fledgling Registrars to now renowned Consultants and Professors have benefitted from our research grants.

I have been kept going and virtually rebuilt, and am so thankful to modern technology and a supportive family around me.

I now struggle with movement and energy, but I have two sons of 46 and 37 and three beautiful grand-children and every day is an added miracle.  My gratitude is to Lupus UK for giving me the strength to fight battles against the many problems that having Lupus has given me, and hope that it continues to help all those with lupus and their families.

Surely the success of Lupus UK is a real story of ‘from Little Acorns mighty Oaks grow’. It shows that if you want something enough you have to go for it!