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World Lupus Month in October - Is it relevant?

Discussion in 'Lupus News, Awareness and Research' started by Geoff, Nov 25, 2008.

  1. Geoff

    Geoff Guest

    Hi to all at The Lupus Site,

    I just wanted an international opinion on World Lupus Month in October. Recently here in Australia, it didn't get a mention in the press/media and it's a month where we're competing for awareness with so many other worthwhile causes like Breast Cancer Awareness.

    My thought was to make May our month, where we can include WLD and it would be a time that's friendly on both sides of the equator for Lupus walks and other outdoor fundraisers.

    There also seems to be some confusion in America, as some believe the month has already been changed to May by The Lupus Foundation of America. I've emailed contacts at both the LFA and the Alliance for Lupus Research regarding this issue as there seems to be some confusion.

    Is October being World Lupus Month still 'locked in' in other countries?

    As I'm quite passionate about awareness, I'd like to clear up the confusion and hear your thoughts and ideas.

    Kind Regards,
    Geoff Thomas
     
  2. Katharine

    Katharine Registered

    Hi Geoff,

    Any form of lupus awareness is totally inexistant in Belgium.

    I have only once seen a poster for the Belgian Lupus association at my rheumy's.

    Even the association is more than quiet and I have yet to meet anyone who actually knows what lupus is - this includes many health care professionals (exclusing docs who do at least have a vague idea).

    Katharine
     
  3. Clare.T

    Clare.T Registered

    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


    _____________________________

    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
     
  4. nicky00

    nicky00 Registered

    To even have a 'month' is indeed something positive.

    Should lupus become 'more popular' and awareness raised then I should imagine that any 'month of awareness' globally shall be bought together eventually into an agreeable time of year....

    It all takes time and as Claire says other diseases people so easily indentify more with.
    Im very grateful to anyone who does their bit towards education,information. and generally anything supporting this disease.

    It is interesting that when I had a breast cancer scare I was treated with the utmost care, respect and attention and that was without having anything wrong with me.

    The visability with Lupus in crawling along.

    Its funny now that I have an autoimmune rash ( indirectly due to meds taken to treat lupus) Im everybodys 'suffering hero'.

    Its such a shame .

    Anything that raises the profile of lupus , so even just not having the burden of having to explain everything to those who have never even heard of it wins my vote.


    I do know lupus will have its stage of recognition one day up their with all the other contenders....

    And quite rightly so:)
     
  5. Lily

    Lily Registered

    Hi Geoff,

    Hasn't one just recently been resurrected?

    I think one of the major problems here in Australia is that many of the people who belong to the Lupus organisations are too ill to volunteer their time or help out. Having said that there are a lot who do that to the best of their abilities.

    You must remember that as far as government funding etc. for research then we are way way behind richer nations like USA. We have some of the most talented and knowledgeable doctors in the world but some have gone overseas (more money and better research facilities) and those who remain are up against it funding wise. A lot of the researchers rely on donations to supplement government funding. Donations which are forthcoming from the fundraising activities of a small group of dedicated volunteers working with limited resources. Some of our researchers are working in conjunction with researchers in the USA and parts of Europe, so there is some degree of collaboration on helping find out more about Lupus and trying to get better treatments going.

    We will never attract the sort of publicity and funding of diseases that are much more common and widespread affecting a large proportion of the population. It's not economically viable to them. The government puts their funding where it is most needed as they see it. Unfortunately that isn't in Lupus.


    Lily a fellow Aussie - too sore to type any more :hehe:
     
  6. marymackay

    marymackay Registered

    Promote Lupus in Any Way

    Hi to Geoff and other interested posters

    Since my first awareness of Lupus and APS at start of last year, I echo other posters about awareness of Lupus. Having had so many sudden horrific episodes over my life-strokes, paralysis, no speech, seizures, etc, etc. I had just got on with my life. But 5 years ago, it happened again, and no doctor here had helped. So at start of last year, as I am a researcher, realising that we had no specialists in this area, northeast coast Queensland, I have found so much help online. I met so many people online in UK and USA, seeing from most that d/x is sometimes virtually impossible.

    My local GP(and others in area) has no knowledge of Lupus, APS or Scleroderma, and it's a long slow process as she relies on reports from specialists down south. In half or quarter an hour visit they get no further than my strokes, aneurism, etc and there is no time for my blood tests, scans, extensive medical history. My many Lupus, APS, scleroderma symptoms are ignored,even the physical exam do not happen.

    It is only by using the Net I find purported top specialists down south, ringing their practice to get appointments, (at least getting referral from GP) paying top money, and paying to fly down south. Two years ago I accessed my local medical Base history, finding that the history from the capital hospital (flown down 30 years ago in coma after 3 days in hospital here) is missing for the 2 months alone there, only know I had a crationomy.

    So I echo Katherine's and Geoff's laments at lack of awareness of Lupus. I applaud Clare's post of creating awareness, particularly re the Lupus badge wearing. I've just purchased a Medic Alert bracelet, but as investigation is still ongoing, it says strokes, sjogrens, allergic to penicillin, sulfa, but the National site tells more.

    Lily's post is so helpful for we Australians, reminding us that there are virtually no funds, just by donation. I rejoined the Qld Lupus group (after their website was hacked) and joined the Qld Scleroderma group just online too, but activity is in capital cities, about $30 a year. As Lily said, groups are run by those with lupus etc at great cost to their health, doing it for many years. Apparently there had been a lupus group here, but with flares, age etc it lapsed. Lily's point of losing top doctors here is also true, and health systems are now into greatly needed reforms.

    Books authored by Lupus/Aps sufferers, such as Kay Thackeray's Sticky Blood, and Triona Holden's Talking About Lupus, and others, help spread the news. Even our local Council Library has Talking About Lupus and Dr Wallace's The Lupus Book available. We must all become better Ambassadors to help others to gain understanding of Lupus

    Thanks Geoff for pushing us all for more Lupus awareness and tolerance.
     

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