Sunday, December 04, 2022

Lupus ‘warriors’ and advocates encourage disease awareness

World Lupus Day is 10 May, to draw attention to the chronic autoimmune disease known as the ‘disease with a thousand faces’.

news release
Lupus Ontario
“I remember it like it was yesterday, not back in 2010. A beautiful September day. My doctor told me, ‘I don’t know how to tell this, but you have lupus. Years—years—of those symptoms’ To be able to make diagnoses that could be explained away from any part of my TV-movie-type life: extreme fatigue (the ‘bone-crushing’ kind), deep pain in my muscles and joints. I Was 36 years old, working full time, and the mother of five. Of course, I was tired. Of course, I was tired.”

Brian Clarke has become a lupus warrior and advocate in the years since his diagnosis, hoping to bring awareness to this autoimmune disease, and encouraging people not to dismiss their symptoms.

Lupus is a chronic, complex autoimmune disease that affects at least five million people worldwide. More than 90 percent of people with lupus are women; Lupus most often strikes during the childbearing years of 15 to 45 years. Blacks, Latinx, Asian and Indigenous people are at two to three times higher risk than Caucasians.

In lupus, the immune system, which is designed to protect against infection, makes antibodies that can attack any part of the body, including the kidneys, brain, heart, lungs, blood, skin, and joints.

“To me, lupus means complete ‘systemic lupus erythematosus.’ I have had three heart infarctions. I have kidney failure. I have pleurisy,” Brian explained of how difficult it has been for his body to fight itself daily.

Lupus is a serious autoimmune disease, which means that your immune system mistakenly attacks healthy cells. It is also chronic, which means it lasts longer and requires long-term treatment.

Lupus is one of the most complex autoimmune diseases. It affects each person with different symptoms that are sometimes difficult to detect and vary from patient to patient, which is why it is called the “thousand-faced disease”. This makes the prognosis difficult to diagnose and access to effective treatment very challenging.

For most people living life with lupus, effective treatment can ease symptoms, reduce inflammation, and maintain normal bodily functions. That’s why it’s important to understand and manage 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 is joining groups around the world that have come together to celebrate the annual World Lupus Day on May 10.

Now in its 19th year, World Lupus Day is marked by increasing public awareness of lupus, improving patient health care services, increasing research into the causes of lupus and the necessary treatments for lupus, the need for better clinical diagnosis of lupus, and better epidemiology. will focus on. Data on lupus globally.

Lupus affects more than just the person with the disease – it also affects their family, friends and work colleagues. Nevertheless, it is less widely recognized by the public, health professionals and governments as a global health problem, requiring greater awareness. Early detection, diagnosis, and treatment of lupus help slow the debilitating effects of the disease. However, lupus is often difficult to diagnose because the symptoms often mimic those of common diseases. Raising awareness about lupus will save lives.

Brian shares that “I had to find somewhere to read about the experience of other patients with lupus at the beginning of my lupus journey.

“What I did was start a blog, Lupus Interrupted. It was intended as a place for family and friends to share my journey. My family didn’t read it. Who read it? People around the world who wanted a real conversation about what it’s like to live with this disease,” Bryan said.

“I wrote to be a patient advocate. I wrote to highlight a lupus journey full of hardships, but full of positive actions. I wrote for Scope, Stanford University’s medical blog, to new doctors. To describe what it’s really like to live with lupus.”

Lupus Ontario is Canada’s largest provincial organization focused on improving the lives of lupus patients and their families. The mission of Lupus Ontario is to provide vital support, education, awareness, advocacy and research through fundraising efforts by our staff and volunteer community to help people with lupus live longer, healthier and better lives.

Brian Clark joined Lupus Ontario as a volunteer and board member to continue his impact of advocacy.

“I didn’t like the hand I was dealt in life, so I changed the game. My epiphany came when I realized that at the end of the day, it was only my choice that would determine whether to remember this life.” Will be done and measured in pain, or in memories,” Brian says.

“I am my own mother of five children, who I am best managing with what has been given to me. What I wish for my children is to be educated about the rights of patience, and to be kind to the journey of others, Whatever their circumstances or sufferings may be.”

Join Lupus Ontario’s effort to increase public awareness and understanding of lupus by promoting the annual World Lupus Day observance in your community.

— Written by Lisa Bilodo, Board Member, Lupus Ontario


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