City hall becomes beacon for FMD awareness

Brandon City Hall — along with other landmarks and buildings across Manitoba — are being illuminated with red and blue lights throughout May, providing a “beacon of hope” for people struggling with a rare vascular disease.

“It gives the feeling that there is a change coming in spreading awareness and providing relief to people affected by fibromuscular dysplasia,” Julie Vogelsang told the Sun on Monday.

The Winnipeg woman contacted the City of Brandon, which agreed for the first time to illuminate city hall to mark Fibromuscular Dysplasia Awareness Month. The lights were set to be turned on at sunset Monday and will remain on every night for a week.

In 2022, Vogelsang was diagnosed with fibromuscular dysplasia (FMD) — a condition that causes one or more arteries in the body to have abnormal cell growth that can lead to aneurysms, dissections and narrowed blood vessels.

She had no symptoms of the disease and received the diagnosis incidentally while she was accessing medical care for an unrelated health issue in Toronto.

At the time, Vogelsang knew nothing about the disease and was told there were no specialists for FMD in Manitoba. This influenced her to become a Winnipeg advocate by joining the Fibromuscular Dysplasia Society of America, given there isn’t a Canadian non-profit involved with FMD, Vogelsang said.

“I have it in four of my neck arteries,” she said.

FMD is commonly found in the arteries that supply the kidneys and brain with blood, but it can also affect the arteries that supply the abdomen and limbs.

The disease impacts what foods, beverages and physical activities she can have or partake in.

“I have to monitor my activities — no straining, no tilting the neck backwards in an extreme position, no contact sports, no holding my breath, no placing my head below my heart level,” Vogelsang said.

“And then all of all those factors relating to blood pressure, like salt intake, coffee, alcohol, high elevation, extreme temperatures,” she added.

Shortly after her diagnosis, she formed connections with others in Winnipeg with FMD and created a local support group that has grown from six to 20 people living with the disease across the province.

Before connecting with Vogelsang online, including plans to join the support group, Brandon resident Renee McKinnon said she didn’t know many people with FMD.

“It’s nice to be aware of other people with this disorder because it is rare and underdiagnosed,” McKinnon said.

She said her daughter was diagnosed with FMD, which prompted her to get tested more than three years ago. McKinnon said she was surprised to receive a positive diagnosis because her only symptom was tinnitus.

Her two siblings have since been diagnosed with the disease, she said.

Aside from having to be “more cautious” and attend more medical appointments, McKinnon said she has been able to continue her normal lifestyle while having FMD.

The disease impacts the arteries in her neck, kidney and around her heart, she said.

“It’s not widely known about in the medical community, and my medical doctor is really good at referring to specialists and monitoring for changes,” McKinnon said.

Periodically, she has to have an MRI or CT scan to see how her condition has progressed, she said.

Due to a lack of awareness of FMD in the medical community, the disease can be misdiagnosed as vertigo, migraines, high blood pressure and tinnitus, Vogelsang said.

Typically, people with FMD have to see a variety of specialists to manage any health issues that arise, she said.

“It’s sort of like there’s going to be number of different doctors depending on how many symptoms you have that you’re going to be going to, but they don’t necessarily co-ordinate together.”

Vogelsang said she wants to see that change.

If people living with FMD unite to share their experiences in Manitoba, it could spike interest among health-care providers to learn more about the disease and better ways to support patients, she said.

In the future, Vogelsang said she would love to see a seminar held in Manitoba, bringing patients, specialists and the public together to raise awareness.

Brandon Mayor Jeff Fawcett said the City of Brandon sign and the flagpole area at city hall will be illuminated at dusk.

“We do those recognitions, as long as there’s something local tied to it, just like the flag raisings,” he said.

Winnipeg’s Esplanade Riel and a tourist sign at The Forks will also be illuminated, as well as Austin’s steam tractor monument.

» tadamski@brandonsun.com