Province lights up red and blue for FMD month

Landmarks across Manitoba are being illuminated in red and blue this month to shed light on fibromuscular dysplasia (FMD), a cardiovascular condition that experts say is far more common than its “rare” label suggests.

On May 1, the Island Park causeway and City Hall in Portage la Prairie were lit up to mark Fibromuscular Dysplasia Awareness Month. The initiative is part of a growing movement led by Julie Vogelsang, a Winnipeg-based volunteer for the Fibromuscular Dysplasia Society of America.

Vogelsang, who was diagnosed with the condition in 2022 through MRI testing, has co-ordinated the illumination of 16 landmarks across the province, including the Esplanade Riel Bridge and ‘Winnipeg’ sign in Winnipeg later this month, along with the York Lobby at the Convention Centre. Joe the Steamer train in Austin was also lit up. Other prominent landmarks have been illuminated across the country thanks to Vogelsang’s efforts.

“Researchers used to call it a rare disorder, and now they’re saying they don’t think it’s rare, but rarely diagnosed,” Vogelsang said. “The lack of awareness and education is not just within those who have it, but also in the medical community.”

FMD causes cells in the artery walls to grow abnormally, leading to narrowing (stenosis), aneurysms, or tears (dissection). Symptoms can include high blood pressure, migraines, neck pain and a “whooshing” sound in the ears known as pulsatile tinnitus. In severe cases, it can lead to strokes or heart attacks.

Global estimates suggest the disease affects two to four per cent of the adult population. In Canada, thousands are believed to be living with the condition, over 90 per cent of whom are women, often diagnosed in their mid-50s.

Because FMD can affect various arteries, patients often see a disconnected string of specialists, such as neurologists for migraines or nephrologists for kidney-related hypertension. Vogelsang noted that in Manitoba, there is currently no single specialist or multidisciplinary clinic dedicated to the disease.

In 2023, Vogelsang formed the only local FMD support group in Canada. What began with six women has grown to 23 members.

“When the six of us first got together, it was the first time any of them had ever met anybody else with FMD,” she said. “Sharing that journey and finally feeling understood provided a profound sense of connection.”

Vogelsang hopes the illuminations will prompt residents to research the disease and help undiagnosed patients recognize their symptoms. She is currently planning a seminar to bring patients and medical specialists together.

“Illuminating the landmarks helps us feel not so alone,” Vogelsang said. “We feel connected to a change that is coming.”

To find out more, Vogelsang encourages people to reach out via email at julievogelsang@shaw.ca. You can also check out the Fibromuscular Dysplasia Society of America website.

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