One Patient's Positive Perspectives

Wow! Yesterday was the last day of Lupus Awareness Month, May 2012 and was also the 62nd consecutive day of Lupus Adventure blog posts.  31 posts in May about 31 Lupus Facts, followed April’s 30-day health blogger writing challenge.  I wasn’t sure I could do it, but here we are, starting the month of June with 62 consecutive posts behind us adding to the ongoing Lupus Adventure.

Lupus Awareness Month in retrospect

The result?  Not exactly world peace, but how about increased global lupus awareness?

Each year, Lupus Awareness Month is the centerpiece of the global lupus community’s annual grassroots effort to raise lupus awareness, to support funding for lupus research, and to support the estimated 1.5 million Americans and at least five million people worldwide affected by lupus.

Blogger lupus awareness efforts

During May 2012 a record 5,000 readers from 98 different countries were welcome visitors to this blog and joined in the Lupus Adventure.  The visitor numbers don’t even include the 450 hits filtered out by spam-blocking software.  There were many new readers from large and small countries on every continent. The reach of the Internet is simply astounding! The interest displayed in lupus awareness was heartening!

Additionally, other lupus bloggers and lupus awareness advocates were undertaking diverse efforts all over the globe to promote lupus awareness.  Everyone stood up on their own virtual soap box, and caused the many voices of lupus be heard around the world!

North and South American lupus awareness activities

Members of the Lupus Foundation of America National Network of local chapters, branches, support groups and affiliated groups conducted countless events during May 2012 observing Lupus Awareness Month in the states of Arizona, Arkansas, California, Colorado, Connecticut, Delaware, District of Columbia, Florida, Georgia, Illinois, Indiana, Kansas, Maryland, Missouri, New Jersey, New York, North Carolina, Ohio, Oklahoma, Pennsylvania, South Carolina, Tennessee, Texas, Utah, Vermont and Virginia.

Other activities in the western hemisphere included meetings, symposiums, celebrations and other lupus awareness activities in the countries of Argentina, Bermuda, Bolivia, Brazil, Canada, Chile, Ecuador, Grenada, Mexico, Paraguay, Peru, Puerto Rico, Uraguay and the West Indies.

Raised Global Lupus Awareness

Here are some noteworthy highlights of well-coordinated earth-spanning Lupus Awareness Month efforts undertaken during May 2012 that broadcast helpful and reliable information about lupus:

World Lupus Day – As part of Lupus Awareness Month activities, World Lupus Day was observed on May 10 — a day when the global lupus community rallied to bring greater attention to this terrible disease.
Africa – In the Republic of Mauritius the World Lupus Day 2012 poster was released to the media and displayed as posters in all public hospitals, private clinics, secondary institutions and other public places.

Asia – The Lupus Foundation of Bangladesh hosted a World Lupus Day Rally Event at the TBIRDEM Auditorium, in Shahbag, Dhaka, Bangladesh from 9:15 am to 1:30 pm. Activities included a rally chaired by President, Professor M N Alam and the Bangladesh Rheumatology Society, and organized by the Lupus Foundation of Bangladesh (LFB.) The day’s events also included a lupus awareness lecture by Professor Syed Atiqul Haq, Chairman, Dept of Medicine, BSMMU with Approx 150 guests including patients, families, well-wishers, physicians, researchers, and media, corporate, government and other representatives.

Indonesia – 2012 World Lupus Day activities included a live event on May 5, 2012 offering free medical lupus consultations, a Lupus Awareness and Education talk show; a performance of “Beautiful Indonesia”; a book launching for two new titles “Sunrise Serenade” and “Luppies Diary”; a bazaar and the 2012 Care for Lupus SDF Awards Presentation.

Australia – World Lupus Day celebrations were held in the Lupus Shop on 1/24 Station Road Indoooroopilly, in Queensland on May 10th.

Europe – The Lupus Europe organization provided Lupus awareness posters and themed artwork for all 23 lupus groups in 21 member countries for a unified European public information campaign and World Lupus Day activities, incorporating the theme “Make Lupus Work.”

Belgium – The Belgian CIB League World Lupus Day event was held on May 10th at the Gasthuisberg Hospital in Leuven, and at four hospitals in the South of Belgium with lupus workers manning an information booth, answering patient and visitor questions and distributing lupus awareness materials. World Lupus Day posters were posted in public places, doctor’s offices, and pharmacies all over Flanders.

Cyprus – the Cyprus League Against Rheumatism celebrated World Lupus Day with a lupus wellness workshop at the Hilton Park Hotel in Nicosia, Cyprus on May 12th, and distributed materials with practical information and advice about life with lupus. Lupus advocates published articles in the local press and participated in radio and TV programs about lupus.

Denmark – The World Lupus Day events included topics about student and work life, new treatments influencing education and career choices and a special “Know your lupus” – educational program presented by lupus patients.

Estonia – Estonian Rheumatism Association had “Life with Lupus” published a special edition of the Estonian Rheumatism Association monthly e-newsletter dedicated to the subject of lupus, published a booklet „My Life with Lupus“, and distributed monthly e-newsletter and patient booklets to patients and health care workers.

Germany – The Lupus Foundation of German hosted the 3rd German Lupus Day on Science, Dresden Conference on SLE and medical symposium for lupologists, rheumatologists and other professionals, and awarded an annual research prize on May 11 – 12, 2012.  Also,  the Wonder of Arts II, Bayreuth Benefit concert in aid of the Lupus Foundation Germany was held on May 12, 2012 at 7:00 pm, a nationwide balloon campaign “40,000 balloons for 40,000 lupus patients in Germany” was held throughout Germany all through May, 2012, and LupusCrossing, and a world-famous postcard project  started on World Lupus Day 2009, with 325 butterfly cards received from all over the world to raise awareness for lupus and to show support for lupus patients.

Hungary – The Gabriella Schopper Hungarian Lupus Group celebrated Lupus Day on May 13, 2012 in Safari Park in Budakeszi and at Tropicarium zoo park in southern Budapest.

Ireland – Lupus Group Ireland is preparing to launch a brand new interactive lupus website on with 24/7 support for Lupus Patients, patient stories, lupus medical information and a flash chat lupus question forum. LGI also unveiled their new innovative Android game application “Lupie,” in a question/answer educational game format.

Italy – Lupus Italy held a World Lupus Day Celebration on May 12 in Bologna with the National Congress of the Italian Lupus Association, on May 19th in Firenze at the Florence Lupus Clinic, and held lupus awareness activities in Catanzaro and Benevento on May 5-6, in Napoli on May 19, and in Sassari on May 19th.

Netherlands – VNLP held a conference for Lupus patients on May 12th at Partycentrum Het Vechthuis in Utrechtconference discussing developments in lupus treatment and announcing the winner of the researcher/clinicians Award for 2012.

Spain – The Spanish Lupus Federation and the Spanish Lupus Association of Cantabria celebrated World Lupus Day celebrating the XI Edition of our National Congress on May 4/5th in Santander, Spain in a 2-day conference and promoted the magazine “LUPUS ESPAÑA.”

United Kingdom – Lupus UK members emailed and text messaged “Today is World Day…” to 10 people that they know who do not have lupus. Schools all over the UK held events promoting World Lupus Day, and distributed lupus awareness posters and bookmarks to students.  LUPUS UK members distributed posters, and many changed their online profile pictures to butterflies to help raise awareness and promote questions about lupus.  News & Views (a national magazine in the UK) devoted 1½ pages of an issue to World Lupus with feature articles about UK World Lupus Day activities.  The St. Thomas Lupus Trust hosted The Joy of Living Concert on May 10th celebrating World Lupus Day at the chapel at Guy’s Hospital  in London.

Ongoing lupus awareness

May 2012 was an excellent opportunity to promote lupus awareness, partnering with many diverse groups of patients, families, friends and members of the medical community worldwide.  Lupus is still incurable, but increased lupus awareness will lead to earlier diagnosis and treatment, thereby lowering mortality and reducing the destructive effect it can have in the lives of those affected by lupus.

Thank you so much for your part in joining in the lupus adventure with me during May 2012  – Lupus Awareness Month!


Lupus Adventurer


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