Wednesday, 7 May 2014

Making Lupus a not so "invisible" illness

Press release from the Autoimmune Resource and Research Centre.


World Lupus Day is May 10th. The day focuses on; the need for public awareness and understanding, the need for increased research into causes and cures, and the need to improve services, treatments and
diagnosis times within the medical profession. World Lupus Day provides a forum for lupus organisations around the world to share new information about this condition and its treatment and to call for lupus to be recognised as a significant public health issue.

Lupus is a chronic autoimmune disease that causes the immune system to become overactive, causing an individual body to attack healthy tissue. Lupus is a complex autoimmune illness that ranges from mild to severe. Autoimmune illness is the 3rd major health issue behind cardiac illness and cancer. As 1 in 20 people live with autoimmunity, it seems that no-one is immune.

In 2014, World Lupus Day will mark its 10th  year. The Autoimmune Resource & Research Centre, situated at John Hunter Hospital in Newcastle NSW with the help of NIB foundation have developed a series of brochures to help raise awareness and provide information to people living with Lupus and other autoimmune illness and those that care for them. Brochures are available on www.autoimmune.org.au.

Please join the international lupus community in urging your government to adopt and issue the World
Lupus Day Proclamation:-
Whereas, lupus is an autoimmune disease that can cause severe damage to the tissue and organs in the body and, in some cases, death; and 
Whereas, more than five million people worldwide suffer the devastating effects of this disease and each year over a hundred thousand young women, men and children are newly diagnosed with lupus, the great majority of whom are women of childbearing age; and 
Whereas, medical research efforts into lupus and the discovery of safer, more effective treatments for lupus patients are under-funded in comparison with diseases of comparable magnitude and severity; and 
Whereas, many physicians worldwide are unaware of symptoms and health effects of lupus, causing people with lupus to suffer for many years before they obtain a correct diagnosis and medical treatment; and 
Whereas, there is a deep, unmet need worldwide to educate and support individuals and families affected by lupus; and 
Whereas, there is an urgent need to increase awareness in communities worldwide of the debilitating impact of lupus; 
 Now, Therefore, Be It Resolved that 10 May 2014 is hereby designated as World Lupus Day on which lupus organizations around the globe call for increases in public and private sector funding for medical research on lupus, targeted education programs for health professionals, patients and the public, and worldwide recognition of lupus as a significant public health issue. 

The Autoimmune Resource and Research Centre is a not for Profit charity that is dedicated to providing education and support for individuals living with a variety of systemic autoimmune illnesses. We are
holding our inaugural Trivia Night on World Lupus Day 2014, for more information and to donate to help the centre continue its work please go to www.autoimmune.org.au.


1 comment:

  1. Hello, my name is Ken McKim.

    My wife has Crohn's disease, and there's some pending legal action in Washington DC that is going to affect her, and everyone who suffers from a so-called "invisible illness."

    I've created a petition that asks the White House to direct the DEA to not reclassify medicines containing hydrocodone to Schedule II from Schedule III, thus making them harder to access for millions of chronically ill people.

    I have also made a companion-video to the petition that explains my reasons for doing this entitled "The Slow Death of Compassion for the Chronically Ill." If you wouldn't mind reviewing it and sharing it with your friends if you feel it's appropriate to do so, it would be appreciated. We have less than 30 days now to get the minimum 100,000 signatures on the petition, and getting the word out is the biggest challenge.

    Petition Link:
    http://wh.gov/lGnus

    Here's the link to the video of my talk:
    http://youtu.be/6UyPlF66KME

    Thank you for letting me share here with you, and take care.

    ReplyDelete

Thanks for being part of the conversation.

Your comment will be visible after moderation.