Communities in the Interlake, including Gimli and Selkirk, are lighting up in support of Fibromuscular Dysplasia (FMD) awareness month this May.
Julie Vogelsang is a member of an informal Winnipeg support group for people in the region with FMD. She said that there were some tears when the group found out that the water tower was going to be lit up to bring awareness.
FMD is a disease that causes one or more arteries in the body to have abnormal cell development in the artery wall. Because of that, areas of narrowing, aneurysms or tears can happen. If narrowing or a tear causes a decrease in blood flow through the artery, people can see symptoms. Many people with FMD don’t have any symptoms or signs and are diagnosed during a scan for another problem.
“It can result in arterial defects, aneurysms; strokes like a TIA(transient ischemic attack) or SCAD (spontaneous coronary artery dissection), which is a type of heart attack; hypertension; migraines; headaches; or pulsatile tinnitus, which is like a whooshing sound in your ears,” said Vogelsang.
She explained that it’s a pretty rare condition that mostly affects women.
“It doesn’t always lead to problems in every artery. So, for instance, I only have problems in my neck arteries. A lot of people have problems in their kidney arteries and, what you will present with as a problem there, is people will have really high blood pressure. They put on all these medications, and they’ll really have problems controlling it,” she said.
“Oftentimes, they don’t realize they have FMD because what happens with the kidney arteries is it can be stenosis, which is a narrowing of the artery, and that narrowing of the artery is what is causing the high blood pressure. Unless you get a scan of your renal arteries, like a CT scan, you’re not going to know that that’s what’s causing it, so you’re going to be treated for high blood pressure until you have a more critical health event and you then possibly get a CT scan.”
Her diagnosis story started with an accidental finding, since she has a different health condition that she was seeking treatment for.
“They did a head to pelvis scan, a CT scan, and that’s where they found the FMD in my neck arteries,” said Vogelsang.
She explained that this condition has meant she’s had to make quite a few changes in her life.
“I used to be quite active but I have to manage my blood pressure. So I’m looking at anything that’s going to create blood pressure spikes, like athletic activity — heavy weights or even (certain) sports could increase your blood pressure. (There’s also) caffeine, alcohol and elevation if you’re at high elevation. I’m constantly monitoring my risks versus my activities,” Vogelsang said.
Tamara Carter, a fellow member of the group from our area of the Interlake, was diagnosed three years ago.
She was first diagnosed when she saw a medical professional about some troubling symptoms and she was first told she probably had an ear infection.
“My gut has always been really strong. And I said, ‘You know what? I don’t have an ear infection.’ I was having some really severe headaches, pulsatile tinnitus, a lot of dizziness, fatigue, all these symptoms that I knew weren’t related to an ear infection because I’ve had ear infections. Sometimes we have to listen to our gut and say, ‘No, you’re wrong.’ So (the physician’s assistant) excused herself from the room and went to speak to the doctor, and he said, ‘Well, we’re going to schedule you for a CT so we can get this looked at,’” said Carter.
The results came back, and Carter was diagnosed with FMD, and further scans revealed that she also has it in her renal arteries.
She explained that she’s been able to do her own research about what FMD is, but she hopes that increased awareness helps increase education since she’s found that going in to seek health-care services for other issues means that she has to explain what FMD is to health-care professionals.
“Sometimes I have to remind the doctors, is that going to be safe for me?” said Carter.
The support group that Carter and Vogelsang are a part of came together originally through posting in the Fibromuscular Dysplasia Society of America and realizing that some of them were local to Manitoba.
“It’s a rarely diagnosed disorder, and a lot of doctors don’t know a lot about it, so it was good to meet as a group and share common experiences and learn from each other,” explained Vogelsang.
She said that their first meeting was hours long since the group, chatting about their stories, felt they could connect with each other’s journeys. The group originally only had six members, but they have grown to 14 people and welcome anyone else with FMD to join.
“I had organized the (original) get-together and I didn’t expect (that connection). It just showed to me how important it was for these women or anyone diagnosed with FMD to talk to other people and to feel heard,” said Vogelsang.
She reflected that learning that the water tower would be lit up also made her feel heard and less alone, knowing that people were bringing awareness to FMD.
“It’s not just creating awareness for people who might have FMD or symptoms of it, but it’s also starting an awareness campaign,” said Vogelsang.
She hopes that, in addition to people with FMD, this awareness helps to have more doctors learn about FMD so that they can better support their patients.
If you have been diagnosed with FMD and want to join or learn more about the informal support group, you can contact Vogelsang at julievogelsang@shaw.ca.
She also recommends that those newly diagnosed or wanting more information check out the Fibromuscular Dysplasia Society of America.
“Often, a diagnosis of FMD is very overwhelming for people, and it feels like it’s a drastic stop to what you were able to do or who you were in the past. And what I would say in encouraging people is just because you have a diagnosis of FMD doesn’t mean that you can’t go forward and lead a healthy, long life. Managing the symptoms of FMD, joining a support group and educating yourself about FMD can do wonders for your coping skills and your ability to manage your disease,” said Vogelsang.
