On May 10, World Lupus Day draws attention to the chronic autoimmune disease known as the ‘disease with a thousand faces’.
Lupus in Ontario
“I remember it was yesterday, not back in 2010. A beautiful day in September. ‘I don’t know how to say this, exactly, but you have lupus,’” my doctor told me. It took years — years — for me to finally get On a diagnosis of symptoms that could have been explained by any part of my life made for a TV movie: extreme tiredness (the “bone-crushing” kind), deep pain in my muscles and joints. I was 36, working full time and a mother of five. Of course I was tired. Of course I was exhausted.”
Brian Clark became a lupus fighter and advocate in the years after her diagnosis, hoping to raise awareness of this autoimmune disease, and encourage people not to ignore their symptoms.
Lupus is a complex chronic autoimmune disease that affects at least five million people worldwide. More than 90 percent of people with lupus are women; Lupus occurs most often during the reproductive years 15 to 45. Black, Hispanic, Asian, and Indigenous people are at two to three times greater risk than Caucasians.
In lupus, the immune system, which is designed to protect against infection, produces antibodies that can attack any part of the body including the kidneys, brain, heart, lungs, blood, skin, and joints.
“For me, lupus means complete ‘systemic lupus erythematosus’. I’ve had three heart infarctions. I have kidney damage. Brin tells how hard it was for her body to fight itself every day.
Lupus is a serious autoimmune disease, which means that your immune system mistakenly attacks healthy cells. It is also chronic, which means it lasts a long time and requires long-term treatment.
Lupus is one of the most complex autoimmune diseases. It affects everyone differently, with symptoms that are sometimes difficult to detect and vary from patient to patient, which is why it is called the “disease with a thousand faces.” This makes it difficult to diagnose the disease and to access effective treatments very difficult.
For the vast majority of people with lupus, effective treatment can reduce symptoms, reduce inflammation, and maintain normal body functions. So it is very important to understand and deal with the symptoms.
May 10 is Lupus Awareness Day, which serves to draw attention to the impact of lupus on people around the world. Lupus Ontario joins groups from around the world who have united to lead the annual celebration of World Lupus Day on May 10.
Now in its 19th year, World Lupus Day will focus on the need to raise public awareness of lupus, improve patient care, increase research into the much-needed causes and treatments of lupus, advance medical diagnosis of lupus, and improve epidemiology. Data on lupus worldwide.
Lupus affects more than the person with the disease – it also affects their family, friends, and co-workers. However, it is not widely recognized as a global health problem by the public, health professionals, and governments, leading to the need for greater awareness. Early identification, diagnosis, and treatment of lupus helps slow the debilitating effects of the disease. However, lupus is often difficult to diagnose because symptoms often mimic common diseases. Increasing awareness of lupus saves lives.
Brin shares that, “What I needed early in my lupus journey was to find somewhere to read about other patients’ experiences with lupus.
“What I did was create a blog, Lupus Interrupt. It was meant to be a place to share my journey with family and friends. My family didn’t read it. Who read it? People from all over the world want a real conversation about what it’s like to live with this disease,” Brin said.
“I wrote to become an advocate for patients. I wrote to highlight their lupus journey that is challenging, but full of positive action. I wrote for Stanford University medical blog, Scoop, to show new clinicians what it really feels like to live with lupus.”
Lupus Ontario is Canada’s largest regional organization focused on improving the lives of lupus patients and their families. Lupus Ontario’s mission is to provide vital support, education, awareness, advocacy, and research through the fundraising efforts of our employees and volunteer community to help people with lupus live longer, healthier, and better lives.
Brian Clark has joined Lupus Ontario as a volunteer and board member to continue her advocacy influence.
“I didn’t like the hand I had in my life, so I changed the game. My epiphany came when I realized that at the end of the day, only my choices will determine whether this life will be remembered and measured through pain or in memories,” says Brin. .
“I am a single mother of five, and do the best I can thanks to what has been given to me. I wish for my children to learn the rights of the patient, and to empathize with the journey of others, regardless of their circumstances or their pain.”
Join Lupus Ontario’s efforts to increase public awareness and understanding of lupus by promoting the annual celebration of World Lupus Day in your community.
— Written by Lisa Bilodo, Board Member, Lobos Ontario