by Stephen Dafoe
May 10 is World Lupus Awareness Day. Both the Legislature Building in Edmonton and the Reconciliation Bridge in Calgary will be lit up in purple Thursday night to raise lupus awareness in Alberta.
But a Sturgeon County woman is hoping to raise awareness locally about Lupus, an auto-immune disease that can affect any part of the body.
Morinville Art Club President and Sturgeon County resident Rozanna McConnell has had Lupus since 2009.
“Lupus is an auto-immune disease where the body does not know what are healthy cells and what are sick cells, and so the immune system attacks everything,” McConnell explained. “In the long-term, you can die from Lupus, just due to long-term inflammation creating scarring, which makes your organs not work properly.”
McConnel said many people are familiar with the term Lupus and may even know people with it, but fewer are aware of what exactly it is.
The disease, McConnell says, mainly affects women in their 20s to 40s, although men get Lupus as well.
McConnell, now 39, was diagnosed at the Redwater Hospital with the disease nine years ago while in the midst of moving her home.
“On that day, I could not get out of bed,” she said, adding her body was racked in pain. “My joints were swollen. I had a rash from forehead to fingertips – my chest, down to my legs. Just red.”
McConnell’s doctor prescribed her prednisone, and she was able to get up and walk the next day after taking it.
But it has been an up and down battle since. In 2011, McConnell had three strokes over three successive months, all due to Lupus and inflammation of the heart causing blood clots travelling to her brain. The experience created some long-term damage, including some peripheral vision loss.
From 2012 until recently, McConnell said the disease was under control. That has changed over the past half year. Lupus is now greatly affecting her kidneys.
“The progression of the disease in the last six months has skyrocketed,” McConnell said. “They are wanting to have my disease under control again. It just happened that the disease reared its ugly head and became active again.”
She is currently taking Rituximab, a chemotherapy drug to stamp out the inflammation in the kidneys.
“Essentially, we are doing an immune system reset,” she said, adding the medical professionals believe she will need only two treatments of the drug.
With Lupus World Awareness Day taking place May 10 and general awareness continuing throughout the month, McConnell wants to do her part to make people aware of the disease.
“It is a movement in the Lupus community to get people more aware of what it is,” she said. “There are so many people that are affected by it but are not getting diagnosed by the doctors because it is hard to diagnose. There is this requirement of so many things that you have to have checked off to say, ‘Yes, you have Lupus.'”
McConnell says by having the day of awareness; it can hopefully help others to seek treatment.
She encourages anyone having unusual symptoms, including extreme fatigue, skin rashes, and joint pain to get checked out.
“Go to your doctor and have them really look at that. It could be a possibility,” she said. “Be your own advocate. Be your own health advocate because it’s your life.”
For more information on Lupus, visit www.lupus.ab.ca and www.lupuscanada.org/lupus-questions/.
Great article Rozanna, ?
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