This World Lupus Day: Let's Get Loud About A Disease That Silences

Canadian Celebrities Lend Their Voice To Support Those Suffering In Isolation

TORONTO, May 7, 2014  /CNW/ - How do you speak up about a disease that affects people in unpredictable ways and is a real challenge for physicians to even diagnose?  How do you make people understand what you are going through if they often can't see any physical symptoms? The reality is many lupus patients feel very isolated and don't reach out to get the help they need. So, this World Lupus Day (May 10), Lupus Canada and Canadian celebrities, Patrick McKenna, Colin Mochrie and Debra McGrath are partnering to give a voice to lupus patients who are often left unheard.

Lupus affects over one in 1,000 Canadians and is nine times more common in women, often hitting them in the prime of their lives between the ages of 15 and 45.  It is an autoimmune disease that causes the immune system to turn against the body and attack healthy tissues or organs including skin, muscles, joints, blood and blood vessels, lungs, heart, kidneys and the brain. What makes it so difficult to diagnose is that lupus manifests itself in different ways for different people and symptoms can mirror those of other illnesses. 

Actor and comedian, Patrick McKenna, is best known for playing Harold Green on The Red Green Show and currently appears on TV's Remedy and The Rick Mercer Report. He knows first-hand about the isolating impact of this disease from watching how it affected his mother who has been living through the ups and downs of lupus for over 27 years. Like many, her symptoms were more internal and she kept them a secret at first.  But, over time they became more physically apparent, including hair loss and skin lesions, and she was finally diagnosed by her family physician.  More recently, she began seeing a specialist who has helped her even more in getting her symptoms under control.

"My mother's experience made me realize how important it is to get people talking about lupus," says Mr. McKenna. "That's the only way we're going to help existing patients feel less isolated and help undiagnosed people better understand what they might have. Once my mother got the right help, she felt so much better both physically and mentally, and I want others to experience that too."

Also lending their voices to the cause are comedians and married couple, Debra McGrath, formerly of CBC's Little Mosque on the Prairie, and Colin Mochrie, of the hit show Who's Line Is It Anyway? 

"Lupus is such a terrible and complicated disease, and yet you hardly ever hear anything about it," says Mr. Mochrie. "Debra and I are involved with Lupus Canada because we really believe that with more public awareness and research funding, lupus could become a thing of the past."

Recognizing the Signs of Lupus

"I see it over and over again – patients come to me desperate for answers after having suffered in silence for months or even years," says Dr. Mark Matsos, Assistant Professor of Medicine at McMaster University and rheumatologist with the McMaster University Lupus Clinic. "Although lupus is very hard to diagnose, early detection and treatment is extremely important because it can help lessen the progression and severity of the disease."

The cause of lupus is largely unknown, though it is believed to be linked to a combination of genetic and environmental factors. Though symptoms can vary greatly from person to person, they commonly include extreme fatigue, unexplained and continuing weight loss, fever, swollen glands and joints, and decreased mobility.  Lupus can also lead to arthritis, kidney failure, heart and lung inflammation, central nervous system abnormalities, inflammation of the blood vessels and blood disorders.  

One symptom that can help differentiate lupus is patients often develop a "butterfly rash," which is a skin lesion that appears in the shape of a butterfly across individuals' cheeks and nose. 

Towards a New Hope for Lupus Patients

"We have come a long way in understanding lupus and how to treat it, but we still have much farther to go and a lot more research is needed," says Dr. Matsos. "The good news is that strong support networks now exist for lupus patients and organizations like Lupus Canada are doing important work in assisting patients and funding essential research."

In order to help fund additional research, Lupus Canada has launched its "Butterfly Campaign" in time for World Lupus Day. The aim is to virtually release 2,500 butterflies and raise $50,000 through donated support.  For every $25 Canadians donate they will release a single virtual butterfly, and three butterflies will be released for every $50 donated. The butterfly is significant because of the unique butterfly-like skin rash many lupus patients get. But, a butterfly also signifies beauty, life and hope, and this is a message Lupus Canada wants to share with all those affected by the disease.  For more information on lupus, the work of Lupus Canada, and ways to donate, visit www.lupuscanada.org. 

About Lupus Canada
Lupus Canada, working together with its provincial partners, is a national voluntary organization dedicated to improving the lives of people living with lupus through advocacy, education, public awareness, support and research. They provide educational and support resources for people whose lives are touched by lupus, raise awareness of lupus and provide funding for research. Through the support of community events and generous, engaged individual and corporate donors, they are able to continue their work on behalf of people living with lupus. To learn more about lupus, Lupus Canada, their member organizations and divisions, visit www.lupuscanada.org or contact them at 1-800-661-1468.

SOURCE: Lupus Canada

For more information or to book an interview, please contact: David Mircheff or Sheba Zaidi, Environics Communications Inc., 416-969-2776 or 416-969-2652, [email protected] or [email protected]; Leanne Mielczarek, Manager, National Operations, Lupus Canada, 1-800-661-1468, [email protected]