Living with lupus a ‘battle every day’

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This article was published 09/05/2012 (4924 days ago), so information in it may no longer be current.

Debbie Dohan feels like there’s a war being fought inside her body.

That’s how the Charleswood resident describes lupus, a disease she’s lived with for most of her life.

Ahead of a series of fundraising events, Dohan — who is president of the Lupus Society of Manitoba — said the disease is still misunderstood by many people, while the symptoms are unpredictable.

“It’s a battle every day,” added Tracey Broughton, the society’s secretary and another lupus patient.

Lupus, a type of arthritis, is a chronic autoimmune disease. One in 1,100 people has the disease, which can affect anyone at any age, although 90% of patients are women.

A person with lupus has an overactive immune system. That means it overproduces the antibodies that fight viruses and bacteria, and makes the patient sick by attacking not only those pathogens but the body’s healthy cells, too.

Lupus symptoms — including joint pain, fatigue, heart, lung and kidney problems, rashes, as well as blood and brain conditions — vary greatly, and can come and go swiftly.

“I could be walking and not limping, and in 15 minutes I could be severely limping, and in 20 minutes the pain could be in my arm,” Dohan said.

Because the disease and its symptoms are so confusing, many people don’t understand it, Broughton said.

“It’s hard for people to believe you have a disability when you walk into a room, and someone says, ‘You look great’, ” the St. James resident said.

Erratic symptoms can also bring confusion and frustration when it comes to dealing with doctors, Dohan said — both before being diagnosed and after.

That puts pressure on lupus patients, who may worry they are being judged as hypochondriacs or attention-seekers.

“We’re always justifying how we’re feeling, our symptoms,” Dohan said.

The many challenges of the disease are enough for some people to give up hope, she said.

That’s where the volunteer-run lupus society helps, by providing resources and support.

The society will also be holding a series of lupus walks this year, including May 20 at St. Vital Park, and May 23 at Caboto Centre, as well as a fundraising golf tournament on June 20.

All money raised will go to Manitoba-based research aimed at making lupus easier to diagnose, medicate and live with, Dohan said.

“And always keep hope for a cure,” Broughton added.

Until that time, the women said their message to those living with lupus is simple.
“Just don’t give up,” Dohan said.

Visit www.lupusmanitoba.com for more information.

arielle.godbout@canstarnews.com