The highway sign that welcomes people to Morden will be lit up in blue to draw attention to a little known disease for the next two weeks.
It is a simple initiative but nevertheless important to people who live with and deal with fibromuscular dysplasia (FMD) and who want to raise awareness of the condition.
“It’s still classified as a rare disease,” said Gloria Thom, who grew up in Morden and was diagnosed with FMD last fall.
“There’s a list of specialists who you will need to see, and what is interesting about that is the specialists actually don’t take this disease very seriously at all, unless if you’ve already had a major event as a result of this disease,” she shared. “The feedback that I’ve received is we’ll take care of you when something really bad happens, but until then, good luck, and don’t worry about it at all.”
“They used to say it was a rare disease, but now researchers are thinking that it isn’t … it’s just not often diagnosed,” said Julie Vogelsang, a volunteer with the Fibromuscular Dysplasia Society in Winnipeg. “I think there’s a lot more people out there who have it.”
FMD is a blood vessel disorder in which some of the strong, flexible cells of arteries are replaced with cells that are more fibrous. This change in composition leads arteries to become stiffer and more prone to damage. The condition can lead to high blood pressure, stenosis, aneurysm, and sometimes dissection of arteries.
“It’s considered an incurable vascular disease, and most often FMD is discovered when they’re initially looking for something else,” said Thom, noting it is a diagnosis that doctors don’t arrive at easily.
“I went into the emergency room because I was experiencing migraines, dizziness, pain in my neck and a couple other things. I felt like I was starting to struggle a bit with memory, and my symptoms were just getting worse,” she said, observing that her family doctor couldn’t really put it together. Her diagnosis finally came when a neuro resident took a look at her CT scan.
Thom reflected on the day-to-day impact of the condition.
“It’s really disconcerting when you start having symptoms like dizziness when you’re driving and you don’t know what’s going on,” she said. “You also want to be very careful that you don’t see your blood pressure rise … if you have FMD and your blood pressure goes up above 135 on 85 … you have to go into the hospital to be checked to ensure that you’re not at immediate risk for a stroke. If your heart rate is high, you have to go into the hospital.
“Every little thing that happens to you in regards to anything that could be construed as a symptom of a stroke or heart attack. You don’t really have the choice to stay home and find out and see what happens. You have to go and be checked.”
Thom has learned that she needs to really monitor herself carefully, but she also doesn’t want it to overtake her and feed the anxiety.
“I experience migraines quite often because there is just not enough blood flow getting to all the parts of my brain all of the time because that artery is squeezed at certain intervals … the neck pain goes along with those migraines, and it’s debilitating,” she said, describing it as being like a migraine on steroids.
Vogelsang recalled being sent home and having her symptoms written off initially as anxiety.
“Some people, it takes years to get the diagnosis,” she said. “The risk with FMD is it can lead to strokes … and if you are having symptoms that might be FMD, you do want to advocate for yourself and have it further looked at to rule out any of those possible risks.”
She was diagnosed in 2022 and then found a group on Facebook to connect with others living with FMD. Those connections have been incredibly helpful as she navigates life with the condition.
“I think there’s a lot more who don’t even know where to turn to or who are living with the symptoms or not getting diagnosed and not getting the help that they need.”
You can learn more about FMD at fmdsa.org.
