Journey with lupus
May marks Lupus Awareness Month. Lupus is an auto-immune disease that affects the tissues and organs in the body. Jackie Riley has been battling the disease since 1977 and has some important tips for anyone who has been newly diagnosed.
“Be very aware what’s going on in your body. Take the precautions you need to prevent a flare up. A flare up is like swelling and a rash. Just take it easy, learn to know your body, advocate for yourself. You know, when a doctor says you’re okay, listen to your body and just know what’s going on, what the lupus is doing, and see your rheumatologist once a year. Get your blood work done every six months like I do. Just be very aware of yourself and how you feel.”
Riley says her doctor at the time couldn’t figure out what was wrong 45 years ago. She then went to a Dermatologist in Winnipeg and that’s when the diagnosis of lupus came, “He said I would have one in a million chance of it to go systemic. He was wrong.”
Denial was the next step for Riley after her diagnosis.
“I didn’t want to talk about it. I didn’t have it. I was hoping it would go away. Of course that did not happen.”
Fast forward to the 1990s and Riley was diagnosed with fibromyalgia. Riley is now 62 and says she has to stay healthy as she tires more and learning to take precautions is vital the older she gets.
Now Riley says the awareness around lupus is more widespread. But there is still more to be done like extra funding and research that can be used to help raise even more awareness around the disease.
Lupus Canada states that one in every 1,000 Canadians is affected by lupus.