April 7, 2022

Living with Lupus

Lupus Canada firmly believes in the power of awareness and having an informed public – this is where exceptional and compassionate support begins. As the national organization dedicated to lupus awareness and support, one of our main missions is to increase public awareness and advocate on behalf of the lupus patient. With over 1 in 1,000 Canadians living with lupus today it is imperative that we continue to support these very important initiatives.

Lupus is a chronic disease characterized by inflammation in one or more parts of the body. It is a complex and sometimes baffling condition that can target any organ in the body, in any individual, at any point in their lives. The cause remains unknown and a cure does not exist. In spite of its widespread nature, lupus is not an easily recognizable disease and remains incredibly under-diagnosed as it often presents itself uniquely in every individual. Instead of getting proper support, patients often suffer from debilitating symptoms while bouncing between treatments and physicians until finally, they are given the diagnosis. Even then, however, awareness and support is lacking.

A diagnosis, although scary, can also be very clarifying and relieving for someone living with lupus. This is the beginning of someone’s lupus journey. Especially when first experiencing symptoms, lupus may not even be considered by patients and may go ignored for some time. This is why support from family and friends is so incredibly important as lupus can be extremely isolating.

Lupus Canada is the only national organization focused on lupus research, advocacy, awareness, and education in Canada. We are fiercely committed to improving the lives of people living with lupus, their families, and their loved ones in Canada, by investing in the initiatives that bring us closer to dedicated treatments and ultimately a cure.

We are working tirelessly to ensure all lupus patients have access to their medications and relevant, up-to-date information as it pertains to COVID-19 in addition to continuing to improve and expand our programs and services during these unprecedented times. The pandemic has brought many new challenges for all Canadians but for those living with an autoimmune disease like lupus, it has become increasingly more challenging to navigate this pandemic.

Highlighted below are some of our initiatives.

Protecting drug access for lupus patients – Advocate for people in Canada living with lupus and their families and to push for more government funded lupus medications.

Research - There is so much within reach of the researchers that can make a significant difference. Lupus Canada funds one Catalyst Grant per year which offers to kick start innovative new projects or research ideas, and we need those breakthroughs. Our research goal is to find better therapies and possibly a cure.

Two of the most recent projects we are funding are Pregnancy and Lupus, which hopes to better predict which mothers with lupus might experience problems and the care that is then needed to ensure both mothers and babies well-being. We are also funding a study to examine cognitive dysfunction in people with lupus. As cognitive dysfunction can affect up to 75% of people with lupus, which often manifests in the form of cognitive fatigue, or "brain fog."

Scholarships for students - We have supported 51 deserving students with lupus continue their studies through our scholarship program. Students with lupus often don’t have the stamina or consistent good health to work and study at the same time, making scholarships vital to achieving their hopes.

Advocacy and Public Awareness - Lupus is often overshadowed by more well-known diseases. A big part of what we do is raise awareness of the disease and its challenges. Lupus Canada works to ensure that supportive policies are created and implemented to meet the needs of people with lupus.

We pride ourselves in building and maintaining a strong community of individuals who support our cause and are interested in lupus awareness and advocacy. Through this community, we are able to promote healthy lifestyle choices for lupus patients, such as monthly dietician-approved recipes, as well as inform caregivers of the importance of their role. With a readership of almost 7,500 to our monthly e-newsletter, over 4,440 members on a moderated online Facebook group, 3,780 Facebook page followers and 2,340 Instagram followers, we are able to hear directly from the patient themselves regarding what they need most from us and external health care providers.

In a constantly changing digital age, Lupus Canada is forever adapting and improving its Public Awareness strategies to increase our exposure and broaden the reach to our target audience and increase traffic to the website. The approach has always been multifaceted and in doing so Lupus Canada is presently on five (5) social media platforms and advertises on Google and Facebook with a comprehensive, diverse strategy for each platform. In 2022 we launched our largest online initiative yet so that we can continue to provide assistance and guidance to the entire lupus community, regardless of geography. 

Through collaborations, with organizations like Lusomé, we are able to further our reach to help bring the much-needed awareness to this debilitating and life-threatening disease during Lupus Awareness Month.

Join us on World Lupus Day (May 10th), a global movement, to recognize the over 5 million people suffering from lupus across the globe to fundraise and bring awareness of the physical, the emotional and economic impact of lupus.

For more information about Lupus Canada please visit www.lupuscanada.org

Together Let’s Make Lupus Visible!

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