life without lupus is the goal of lupus canada

according to lupus canada , lupus is a chronic autoimmune disease that manifests in inflammation in one or more parts of the body. symptoms vary from person to person but can include joint pain, extreme fatigue, rash, chest pain, weight gain and headache — which is why it’s referred to as “ the disease with a thousand faces .”

it’s also difficult to diagnose, since symptoms can sometimes mimic rheumatoid arthritis and multiple sclerosis . more than one in 1,000 canadians live with lupus, and women are eight times more likely to be affected, usually between the ages of 15 and 45. under and over those ages, the disease, which presents as one of five types — the most common is systemic lupus erythematosus (sle), which targets any tissue or organ in the body — affects both sexes equally.

although it was identified more than 2,000 years ago, there is still no cure for lupus, and its cause is still not fully understood, although heredity and hormones may play a part. leanne mielczarek, executive director, lupus canada , shares some background, as well as why she believes that, with education and awareness, the organization’s goal of “life without lupus” will soon be met.

how did lupus canada come to be?

what are the primary objectives of lupus canada?

what services does the organization offer?

we have a facebook support group where we provide different programs under the let’s talk lupus umbrella, such as advocacy webinars, disease awareness webinars, and many more. we have a library of those webinars, which help educate and inform people about the disease.

we also have a scholarship program that gives $2,000 to six students living with lupus to help offset the costs of post-secondary education.

what are some of the challenges facing lupus canada?

do you lobby government on these issues?

what are some of the new treatments in development?

what are some of lupus canada’s current initiatives?

sixty-four landmarks across canada are being illuminated either on may 10, which is world lupus day , or may 19, which is put on purple for lupus day . we have a webinar that we are collaborating on with the arthritis society about the difference between rheumatoid arthritis and lupus, because there is quite a bit of crossover between those two diseases.

we also have the disease of 1000 faces campaign , which is ongoing. we’re collecting photographs and stories of those living with lupus to show the human side of this disease. and throughout the month, we will have videos and testimonials that will be shared through our social media initiatives.

what are some misconceptions about lupus?

do you partner with other organizations around the world to advance research?

yes, we partner with the lupus foundation of america because they have a much larger reach to get messaging out there. we are also a member of the world lupus federation , which is a group of global lupus organizations that we work with to share the message and keep everyone up-to-date with the struggles and successes in other parts of the world.

what do you hope living with lupus will look like in five years?

and maybe one day there won’t be a need for an organization like yours?