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The disease with 1,000 faces now has 1,000 masks: Recognizing World Lupus Day during COVID

Walk for Lupus will be held on Aug.21 with participants encouraged to walk, ride, cycle, or take part in any physical activity

Today is World Lupus Day. 

Lupus is an auto-immune disease that affects tens of thousands of Canadians every year. Often referred to as ‘the disease with a thousand faces',  the condition is complex and displays several different symptoms which vary from person to person, making it difficult to diagnose. To date, there is no known cure and only costly medications are available to those suffering.

The disease is characterized as a ‘self-allergy’ to one’s own body and can attack parts of the body including tissue, organs, muscles, joints, blood and vessels, lungs, heart, kidneys, and brain, causing an array of symptoms such as extreme fatigue, joint and muscle pain, anemia, and eventually, the destruction of vital organs. It is most common in women of childbearing age but can also afflict men and children.

Every year, Lupus Ontario hosts a large fundraiser called the ‘Lupus Italian Dinner, Dance, & Silent Auction’, bringing in around $100K which supports ongoing research and programs available to those afflicted with the disease. However, since Covid, Lupus Ontario has had to cancel the event for the second year in a row.  Instead, the non-profit organization focuses on its annual ‘Walk for Lupus’ and pivoted by making the fundraiser virtual.

This year’s virtual Walk for Lupus Ontario will be held on Saturday, Aug. 21, 2021. Participants will be encouraged to walk, ride, cycle, do yoga, or any kind of physical activity to help raise awareness while collecting donations for Lupus Ontario programs and continued research on the disease.

“It’s a challenging effort to bring those donations in,” shares Brynn Clark, Director with Lupus Ontario and social media representative. “Last year, people were afraid to ask for money (or donate) because people were losing their jobs [due to Covid].”

Clark is on the public awareness committee and chairs the advocacy committee for Lupus Ontario. She is also a facilitator for a Lupus support group in the Ottawa area. She shares that Lupus Ontario continues to work with all levels of the Ontario Government to get the word ‘Lupus’ on the lips and ears of all healthcare officials, with an added goal of getting provincial recognition for May 10 as the official ‘World Lupus Day’.

“Our goal is to have better advocacy for patients and bring the issues that Lupus sufferers are facing to the Ontario Government,” says Clark. “It’s a hard one, especially during the pandemic – managing health, anxiety, and uncertainty, vaccinations, being stuck at home – add Lupus symptoms… it’s a challenge!”

Clark is a mother of five. Her children range in age from 14 to 25, with two twin boys in the mix.  She was diagnosed with Lupus in 2010 and immediately began looking for supports and resources to help manage her pain and provide answers about the tricky disease.

She and her family participated in many Walks for Lupus, raising funds for the cause and promoting more awareness. In 2019, Clark recognized a need for more media promotion, so she volunteered to manage all social media accounts for the organization, and in May 2020 she applied and joined the board of directors with Lupus Ontario.

“I’m in a bit of a plateau right now. Currently, no medications are required at the moment,” shares Clark about her Lupus condition, adding that some medications conflict with other health issues she’s had over the years. “I deal with a lot of chronic, intense pain and fatigue every day. If I woke up not in pain, I’d think I was dead – it’s just a normal part of my life now, it’s just always there.”  

Clark describes Lupus fatigue as “bone-crushing” with an added level of pain that makes it exceedingly difficult to live a happy, normal life.

“When you’re involved with pain and medical issues every day of every month, you start to question the “why”, what did I do? How can I not just exist, but live, and that encompasses ‘wanting’ to,” says Clark.

When the pandemic hit, Clark left her job at a health and wellness store and decided to go back to school, enrolling at Carleton University where she is working on obtaining her Bachelor of Science, majoring in Earth Sciences. But in October, the worst happened – Clark contracted Covid-19.

“There were a couple of days where I thought, I cannot do this anymore, I’m tired of fighting,” expresses Clark. “Looking back, it could have been so much worse! But in that moment, it was trying to manage the Lupus, it gave me heart palpitations, I couldn’t breathe, and with having a Lupus ‘flare up’… I thought if I got Covid I would die!”

Clark shares the ordeal took a huge toll on her mental health, but she was able to keep her feet on the ground after discovering a mental health initiative organized by a fellow colleague who offered free counselling sessions to students who were also parents.

“Sometimes we’re afraid to ask for help,” admits Clark. “I don’t want to be a burden to anyone else… the mental toll of being a Lupus patience among regular things is challenging, but with Covid, overall it’s overwhelming!”

She adds, “I didn’t like the hand I’d been dealt in life, having Lupus, so I changed the game. My epiphany came when I realized that at the end of the day, it’s only my choices that will determine whether my life will be remembered and measured in levels of pain, or by the value of the memories I choose to continue to make. Raising awareness and providing safe spaces within which other Ontario Lupus patients are able to connect will hopefully provide the foundation that all Lupus patients need: To know that they do, indeed, matter."

To learn more about Lupus Ontario, or to register for this year's virtual Walk for Lupus, visit: www.lupusontario.org


Jackie Kozak

About the Author: Jackie Kozak

Jackie Kozak is a reporter/writer whose work appears on both BradfordToday and InnisfilToday
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