July's Guest Blog - Cheryl Marcus (Founder of LUPUS UK)

July's Guest Blog - Cheryl Marcus (Founder of LUPUS UK)

To mark this month's release of the 100th Issue of News & Views magazine, our guest article if from Cheryl Marcus, founder of LUPUS UK, on the origins of the magazine and charity;

As I watched my grandchildren open their Christmas presents last year, consisting of a toy iPad Mini for three year old Darcey, and a junior laptop computer for seven year old William, I am reminded of a time long gone, when these sorts of good would be what dreams were made of, and what was more amazing was how easily they learn to play with them and took their ability for granted.

But now I have to roll back time 35 years to a time before mobile phones, flat screen TV’s and household computers and the time when I first write the one sheet of paper that was to eventually become the basis of LUPUS UK News and Views. To many of you reading this, that may seem like an age, but to me it seems to have flown by and the changes that have happened in that lifetime to me are immeasurable.

As a young 24 year old woman recently diagnosed with lupus and having been a patient in a London hospital for nearly a year, I was so lonely, scared and absolutely desperate to just find one other soul who had the same condition and who I could communicate with. Professor Graham Hughes, my consultant at Hammersmith Hospital in London, encouraged me to seek out others in the same position as myself, and how right he was.

Through a very kind friend contacting a local radio station I was able to broadcast an appeal from my hospital bed, and that was to prove the beginning of a major chapter in my life. Joyce Cross was the first lupus sufferer who wrote to me and from there many others followed, Susan Knowland and Paulette Pelosi being two other memorable names and many like me, were in hospital and others who just were at home feeling very unwell and isolated.

Bearing in mind also, that in the 1970’s lupus was referred to as Systemic Lupus Erythematosus and the doctors treating it were carrying around large medical text books about lupus, in which most referred to lupus as “a fatal condition”!!! Treatment was invariably just massive doses of steroids, and a lot of crossed fingers. Most of the patients, like me, had massive weight gain, very round faces and were losing their hair and most in their early 20’s were very aware of fading looks and the thought of men in their life and future children seemed a distant dream. I was so lucky that I had married in 1971 when I was 21, and had a beautiful baby boy Daniel in 1973, but most importantly my new husband was a pillar of strength and definitely did not weaken despite very difficult odds.

To return to the point of this article (wandering off the point we shall put down to my senior years!) and the start of News and Views. As the number of pen pals increased so did the size of the newsletter, and also at this time began the inception of the British SLE Aid Group (now known as LUPUS UK) which was to become the major lupus charity that it is now, it also led to lupus groups around the country and indeed all over the world.

It was soon very obvious that I would need to have a small magazine available to the new “members” and so I began sitting down at my very old typewriter with my tippex and carbon paper and writing down my thoughts and those of others.

To put this article into context I think it is useful to quote my article written in Issue Number One, published in May 1979.

“The publication of this first newsletter is a personal triumph for me since my shaky start as a one-man band in 1977.

I had suffered very severely from S.L.E. since the age of 21 years, and while lying in the hospital ward frightened by the many strange symptoms and the drugs that are used to control the illness, I vowed that once I was capable of putting pen to paper that I would try to prevent this feeling of isolation that surrounds a rare disease. I was convinced that the lack of knowledge about the disease given to the patient was causing unnecessary suffering.

I was greatly inspired by a visit while I was at my lowest ebb aster a stay in hospital of eight weeks, from the Honorary President (Nancy Cohen) of the American Lupus Group. She had lived with the disease for more than a decade and knew well the emotional and physical problems that lupus can cause. She is now in remission and is actively involved in educating both the public and doctors about the previously misunderstood disease”

I was soon able to ask some of the doctors to give me articles to put in, as well as an advice column. I drove my family mad trying to type when the ribbons were breaking down, when my energies were minimal and when I worried that I would receive no copy to put in them.

My typing was slow and laborious and the printer who received the sheets suffered trying to keep it in order ready to return to me to collate and put in envelopes.

I would lie in bed at night worrying if I had enough of interest in the magazine to warrant circulating it, and if my lupus affected hands would cope with my typewriting for much longer. But the interest that has come from the magazine and the formation of a group for lupus sufferers well exceeded the worries and so I continued typing, locked away in my little study at home. I must have been an absolute nightmare to live with!

Due to local radio stations, publicity at local hospitals and doctors the membership soon grew and it became obvious that the magazine would have to be a lot slicker and more professional than my home typed efforts. Added to this my printing company was nagging me to stop using a typewriter and use a computer.

I had definitely not been brought up in the computer age and even the thought of using one sent shivers down my spine. How on earth would I be able to cope, they even seemed to have their own language and those who used them were speeding along like zombies. The thought that I would have to give up News and Views and pass it onto someone with computer knowledge crossed my mind, but my family spurred me on to face the challenge.

Therefore I looked up in the Yellow Pages a computer course going on at a small office over a local shop. I was so nervous and remember the day so clearly especially as I had managed (with great difficulty owing to the crutches) to climb the stairs, and enter a room filled with computers lined from one end of the room to the other. The other 10 students and I all looked at each other with fear written over our faces and we were each handed a manual and told to start!! This manual seemed to be full of gobbledegook and I just sat there, book open, but with not the faintest idea of what to do and to make matters worse, those around me seemed to be getting on OK. At the first break a young man offered to help and he turned out to be my saviour as he translated the book into human words, and soon I had turned a corner, and the computer was no longer my enemy. The course lasted 6 long weeks and although not as proficient as the others, I felt capable enough to type out the magazine able be able to hand over a disc to the printing company.

Once the printer had it on disc he was eventually able to turn it into colour, clearer print, put in adverts and generally make it look quite unbelievably wonderful. I was absolutely over the moon and I was soon writing to doctors with great eagerness begging for articles, asking the membership to participate and also asking pharmaceutical companies to sponsor and advertise the magazine. The magazine was soon running photos of marathon runs, group coffee mornings, articles of inspiration from other sufferers and loads of information about groups forming all over the United Kingdom, plus, I hope we were able to offer lots of help and advice not only to the sufferer, but to the family and friends of the sufferer. A properly bound magazine with a different colour front was soon arriving at the front door of all the members, and by now it was being packaged and distributed by a Head Office that was superbly run by Eric Howard and Geraldine Leonard in Romford. Eric, together with Geraldine, working on a voluntary basis, set us on our way and gave me and the charity invaluable support just when it seemed we would not be able to cope. Eric’s successor, Brian Hanner, took us forward in leaps and bounds and helped me greatly in all respects and it is only through his efforts that the magazine became as professional as it is now. His contribution to LUPUS UK and the welfare of all patients and their families and friends is immeasurable.

Over the next 25 years the group became a “big player” in the charity stakes, with a super National Office in Romford, Essex, with four full time staff and two part-time and we have over 6000 members, with groups in all parts of the United Kingdom. The magazine is read all over Europe (LUPUS EUROPE) and America and in many, many other countries.

The magazine that became “my third baby” was now ready to be handed over into more capable, younger hands, and never would I realise how hard this was going to be. I had to make a major decision, but after 25 years as Editor I knew it was right for me and the Group to hand News & Views to Chris Maker and Christine Watkins at National Office, and so in 2004 they took it on and have done an absolutely brilliant job. It is now much more “of the time” and is full to bursting with news, reports, on-line services which make the most of the social media age, pictures and inspirational stories. It is admired all over the world and I can’t thank our wonderful National Office staff enough for their dedication to it.

In 2012 I felt it was correct that the right home for all the back issues, from Number One, was at National Office. I felt as though I had “empty nest syndrome” as I handed over to them all back copies of News & Views, a very large archive of magazines from Day 1, but they now reside in Romford where I know they will be properly looked after and provide a history of the inception and growth of the Lupus Group.

I am now enjoying looking back on those years with happiness, remembering sometimes the slog, but mostly the laughter and some of the awful mistakes made. Giving a Professor the title of Doctor remains one of the boobs, plus announcing retirement of someone who was in his prime, without forgetting some awful spelling errors that were quite accidentally rather rude!!!

Those hours I spent at my computer, chasing doctors on the phone and trying to get inspiration for articles are not missed as I now manage to get to a local swimming pool regularly and enjoy an art class, even manage trips to the cinema, but I will always be thankful that I have managed to start a magazine that is now so successful all over the world and I know is still helping many thousands of people. I thank those original friends in my life who inspired and cajoled me to “get going” and hope that we can share many anniversaries of LUPUS UK News and Views together.

When each new magazine arrives by post I look at it with pride and admiration and amazement that from such small beginnings a publication which circulates throughout the world, and whose format has been copied by many different lupus groups is being produced so brilliantly, but more importantly, gives sufferers the opportunity never to experience the loneliness that lack of knowledge and friends brought to us in the 1970’s.

This significant 100th Issue is a true testament to what can be done with hope and determination.

If you're not currently a member of LUPUS UK and would like to receive News & Views magazine, you can join for £10 per year here - lupusuk.org.uk/join-lupus-u...

This article originally appeared in News & Views Summer 2013 Edition

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1 Reply

  • I have to say how glad I am of the preliminary work in the 1970s and that it has grown to provide such a fantastice support network to people with Lupus. I was a student nurse in the 1980s and remember looking after a lady in her mid twenties who was receiving high dose steroids for SLE. The consultant told me that her life expectancy was likely to be 5 years. I was horrified that this healthy looking woman had essentially been given a death sentence. I put SLE on my list of diseases not to get. Imagine how I felt back in February when my antibody screening suggested Lupus. Lupus UK has provided an excellent and essential resource for what has been and still is a very lonely experience. I am very lucky to have been referred to a fantastic Rheumatology team who listen and demonstrate empathy. And I know that with good care, careful monitoring and a healthy lifestyle I can expect to live a normal life. Thanks largely to Lupus UK and the HealthUnlocked forum.

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