Living an illuminated life

Crescentwood

April is Volunteer Month, but for volunteer Julie Vogelsang every month is Fibromuscular Dysplasia Awareness Month. April just happens to be the month when Julie gears up for the national campaign throughout May to inform and support those who have FMD, as it is commonly known.

FMD is a rare disorder that causes abnormal cell growth in the walls of your arteries (the blood vessels that carry blood from the heart to the rest of the body). Instead of being smooth and flexible, the arteries become stiff, thickened, or develop weak spots.

Many people don’t even know they have FMD if they have not had a CT scan or MRI, because their presenting health issues are usually migraines, high blood pressure, neck pain, dizziness, vertigo, shortness of breath, kidney problems or fatigue. FMD can happen at any age. Smokers are at an increased risk and smoking makes the disease worse, according to researchers at the Mayo Clinic.

Often people find out they have FMD after a stroke or heart episode. While it is not terminal, there is no cure. Many family doctors are not aware of the symptom-cause connection – which is where Julie comes in.

Advocate, supporter and PR person, Julie is passionate about her mission to educate both medical practitioners and the public about the disorder which affects her and many others.

What surprised her the most at the very first FMD support group meeting she attended was how much participants needed to tell their stories and be heard. Feeling understood was paramount “because it is so rare to find others with FDM. We all came away with a profound feeling of support and connection,” Julie said.

The Winnipeg FMD support group began in 2023 when Julie found several other local people on the Fibromuscular Society of America Facebook page.

“We know there are hundreds of FMD patients in the city and we want to be able to connect with them and offer support,” Julie said.

Their main resource is the Fibromuscular Dysplasia Society of America at www.fmdsa.org.

Nancy Sacco, a local FMD supporter and advocate, said “while a diagnosis is life-changing, you can’t stop living.” She added that “while the heart centre at St. Boniface Hospital is world class, we need a FMD specialist here, as there is only one in all of Canada, in Ottawa.

Nancy’s FMD journey began when she awoke one morning with what she called “a wonky eye.”

Although no longer able to enjoy horseback riding, Nancy is able to work in health care and treasure every moment with her family.

Julie also began to live her best life in earnest after a medical scare in 2002, which resulted in her being diagnosed with FMD.

“After having a near-death experience, you look at life differently,” she said. “There is grief at the onset over what you have lost but you can embrace what you are able to do.”

Nowadays she does everything from singing in two choirs to taking voice lessons, learning advanced French and German to cross country skiing, playing weekly games of billiards and badminton, and practising yoga and volunteering. Her advice to others is “don’t quit, adapt.”

During May, Julie has arranged for red-and-blue illuminated lights to shine, including the Winnipeg sign at The Forks, near the festival stage.

To find out more about the local FMD support group, e-mail Julie at julievogelsang@shaw.ca.