Hello Geoff
I agree that it's an unsatisfactory situation, at first sight.
I can't think why there is such confusion as I can't recall the debate a few years back. According to one site May is National Lupus Awareness in the USA 2009 anyway. But there are plenty of events such as walks organised in October I am pretty sure that LupusUK was instrumental in establishing May 10th as World Lupus Day
That site's October 2009 list has "worldwide" Lupus Awareness Month with the organisation named as LupusUK.
MAY
Multiple Sclerosis Awareness Month ............ Canada
Huntington's Disease Awareness Month......... Canada
National Osteoporosis Awareness and Prevention Month....... United Kingdom
Cystic Fibrosis Month..... United Kingdom
National Stroke Awareness Month ......... United States
Melanoma/Skin Cancer Detection & Prevention Month......... United States
National Arthritis Month ..............United States
Better Sleep Month ...................United States
National Mental Health Month.......... United States
Asthma and Allergy Awareness Month ................ United States
National High Blood Pressure Education Month.................. United States
Better Hearing and Speech Month.................. United States
National Lupus Awareness Month.................... United States Lupus Foundation of America
National Cancer Research Month ........................ United States
Correct Posture Month.......................... United States
National Neurofibromatosis Month..................... United States
Hepatitis Awareness Month ........................... Worldwide
OCTOBER
National Bandanna Day............Australia
CanTeen
SIDS Awareness Month.........Canada
Canadian Foundation for the Study of Infant Deaths
Autism Awareness Month.......Canada Autism Society Canada
Eye Health Month.........Canada
Breast Cancer Awareness Month.......Canada
Breast Cancer Awareness Month.......United Kingdom
National Liver Awareness Month..................United States
Celiac Awareness Month ........United States
Lung Health Day......United States
Healthy Lung Month..........United States
National Orthodontic Health Month.........United States
National Down Syndrome Awareness Month.......United States
National Brain Injury Awareness Month......United States
National Spina Bifida Awareness Month..................United States
Lupus Awareness Month.............Worldwide Lupus UK
Rett Syndrome Awareness Month.............Worldwide International Rett Syndrome Foundation
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Forgive me if I sound dense or worse still an awkward pesky type, but what difference does it make which month each country chooses, assuming each makes the choice for their own particular reasons. I don't know why LupusUK chose October but maybe the fact that we have Bank Holiday long weekends both at the start and at the end of May has something to do with it. But it's not as if the effort was internationally shared. Brits aren't going to broadcast on American radio stations. Americans or other foreigners aren't going to be writing articles in the British press. The internationalism of awareness is coincidental, like the runner up in America's Top Model show who has lupus. That show is shown in the UK too but Mercedes is a LFA Lupus ambassador ( or whatever it's called) and isn't going to be actively promoting awareness on behalf of LupusUK. As for fund raising, the American situation is rather different from the UK but more important the funds raised aren't spread internationally or raised for foreign causes. When I lived in the USA I was a member of LFA and I still get literature from ALR and the SLE Foundation of NYC. Back in the UK I am raising awareness here inevitably and donating to UK causes.
Awareness efforts are at national, regional, at very local levels or even purely personal. It is a good idea to devote a period of time for a really focused effort for public attention especially getting media exposure, for a blitz type effect, but awareness activities can go on all the time at every opportunity that presents and with different targets.
It is just as important that the health care professionals and all those public officials we come into contact with have a better undersatnding of lupus. Often doctors' understanding is minimal and very often dangerously misinformed. We read rubbish statements here every day. 'Rubbish' is an understatement to conform with the Guidelines.
Just this morning at my GP's for a routine check up, I was thrilled that he had two doctors in training ,one sitting in on consultations, and the other a registrar doing her specialist GP training after qualifying, whom he called in for
my lupus awareness and information act, where they have to guess what's the matter with me, with me feeding them clues asking them questions and so on. I
love doing this and have given my Lupus in 5 Mins talk when giving blood for example for tests, or to anybody who asks about it.
I also wear a lupus badge and sometimes get asked about it .Once in a lift a fellow noticed it and told me a friend of his had just been diagnosed with lupus nephritis and he wanted to know where he could get more information and
donate.
One problem is never knowing how effective one's effort has been. You might be lucky enough to get some indication at the time but it is very likely that the effects could be felt ages afterwards and you'd never know.
I was on a group outing and when we were deciding where to sit for our picnic lunch, I said I had to be in the shade. An acquaintance asked , in a friendly, interested way, why that was, so I told her about lupus and photosensitivity and since it affects my facial skin very badly it is plain to see. I next saw this woman months later. She rushed up to me excitedly and told me that she had mentioned lupus to a friend of hers who had a
' butterfly' rash & who'd been suffering ill health for several years. Her friend had indeed been diagnosed with lupus shortly afterwards.
If you look through the forums you will see references to the efforts members have made in Awareness month both here and in the USA. One of our members who's active in her local LupusUK branch regularly gives an interview on her local radio station. Other people undertake sponsored activities and raise funds at the same time.
One member went to a great effort this year with a table and publicity material in her local supermarket. She sat there all day and reported not the slightest interest. Very disheartening. But as I say she might never know that she did in fact make a difference to somebody's life
With SLE there's a probem of identification. All women have breasts and wombs and all men have prostates and testicles. Cancers of these visible organs have an immediate powerful impact on us all, in a way other cancers don't. But a disease so varied as lupus ? Where to start ?
There's also a dilemma of presentation with lupus compared with the cancers. Lupus is often still considered fatal by the ill informed but since it mostly is not these days how do you find the balance between scaring people silly and assuring them that it is very treatable and downplaying its potential severity.
The other problem is the 'invisibility' of the seriousness of lupus. The general public find it hard to understand that somebody can be very ill and suffering but look perfectly normal. I once seriously suggested that lupus skin could be used to dramatic effect in publicity but I was told it was much too unpleasant to look at. Heaven forbid we
upset people with a reality. Go figure.
I don't see that there is going to be any huge dramatic breakthrough in awareness until some very public internationally known personalities are diagnosed with SLE, but every effort has to be well worth it, on the drip drip principle.
Wishing you the best of luck and success in your efforts, and thanks !
Clare
