Pam Mace was in her late 30s, living an active and healthy lifestyle, when she was diagnosed with fibromuscular dysplasia or FMD, a poorly understood cardiovascular disorder that strikes women up to 10 times more than men and can trigger life-threatening stroke and heart attacks.

Now 50, Pam, who lives in Grosse Ile, Mich., is living what she calls “my new normal” — she can no longer run the distances she once did, but she remains active and still laces up her running shoes. “For many years after my diagnosis I wasn’t able to run,” she says. “I took my time and allowed my body to heal and eventually was able to get back into it.”

In the years since her diagnosis, she’s also made incredible strides in becoming an advocate for heart health. One way she’s doing this is by serving as a Detroit Medical Center (DMC) Epic Heart Hero as part of this fall’s Detroit Women’s Half Marathon & 5K on Belle Isle.

Race organizers describe a DMC Epic Heart Hero as “a woman who has come back from a heart issue, has taken control of her health, and refuses to let this stop her.” These heroes “approach life with passion and strength, as she knows too well how short life can be. She embraces a healthy lifestyle and she teaches and helps others in their quest to get healthy.”

“I am always so inspired when I hear all the stories of the DMC Epic Heart Heroes, and are truly amazed at their determination,” says Mary Culbertson, race director. “I hope that sharing these stories helps raise awareness that heart problems can affect anyone, women or men, young or old. Heart disease is the #1 killer of women and it’s important to take care of yourself and your health.”

MRG recently caught up with three of the 2015 Heart Heroes — Pam Mace, Stephanie Festian and  Erica Dahlgren. Read on for their inspiring stories.

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Stephanie with her family – husband Jeff and their three daughters.

Heart Hero: Stephanie Festian, married to Jeff and mom of three girls. Lives and runs in Grand Rapids.

My heart health story: Long QT syndrome (LQTS) is a heart rhythm disorder that affects how long it takes the heart to reset itself during each heartbeat. If your Q-T length is longer than it should be — 450 for men, 460 for women — you are at risk for sudden cardiac death. This is a condition you can be born with (as I was, although we didn’t know until I was 18 and had a cardiac arrest), or certain medications and medical conditions may cause long QT syndrome.

For me, living with this means being very aware of my body, paying attention to my body and watching medications I take (I have an 8-page list of medicines I need to avoid). I have no special diet, although for the sake of myself and my family we do try to eat healthy. I take a beta blocker, and due to my q-t interval elongating recently after 23 years of being under control, I had a pacemaker/defibrillator implanted June 12 of this year. When I was first diagnosed, I was told to not do athletic things, but that has changed. Because of that, and because I didn’t make it a priority in my life, I didn’t start to really exercise until about two years ago. I was 39 and knew if I didn’t start to exercise now, I really never would again. With my husband’s support, I decided to sign up and train for the Princess Half Marathon at Walt Disney World. I knew if I committed my family’s time and money to a trip, then I would never back out. It wasn’t pretty, and I didn’t train very well, but I did it in 2014.

My family’s genetic marker has been identified, so we were able to test all three of my daughters very early on for LQTS and two of my daughters don’t have it and are not carriers of the gene, but my youngest does have it. She takes beta blockers and sees a specialist here in Grand Rapids. Aside from being very aware and taking medicines, she is able to lead a pretty normal life, although I worry when she is in cold water or around roller coasters.

What running means to me: Running gives me “me” time. My three daughters asked me to buy myself a shirt made by Fellow Flowers that reads “mommy going for a run isn’t mommy being selfish, it’s mommy being awesome.” That really is how they feel. I have come to the point where runs help me to be in a positive mindset – it wasn’t always that way, but I now feel much better when I run and do other things active on a regular basis. It has been good for both my body and my mind, I feel. I am very fortunate that both my daughters and my husband Jeff are very encouraging.

I joined Gazelle Sports Run Camp last year in June and am on my third run camp now. The training program and meeting other runners who run the same pace as me has helped me to get a plan and a focus. I love the social aspect of it — we talk about everything under the sun while training. This has really helped me to just stick with it. I run farther, faster and more consistently when I do run camp.

Running the Riverbank Run: This year was my first time doing that race – I signed up last year but didn’t put the training in and I knew it wouldn’t be possible without it. I did the 5K and 10K instead. This year it was wet and muggy, but thank goodness cool. I pretty much bathed in body glide before doing the run. My friend Nichole and I had never done it before, so just finishing with a smile on our faces was our goal. We definitely did that. We had a “pie in the sky goal” of 2:45-3:00 for a time and we crossed the finish line at 3:03, both of us were pleased with that.

Becoming a Heart Hero: I wanted to do the Women Run the D race because some of my run camp friends did it last year and enjoyed it. And since it benefitted the American Heart Association, I thought that would be wonderful. Not many people have ever heard about LQTS and I thought if I applied to be a Heart Hero I could increase that number.

What I want all women to know is to listen to their body. If you think there is something not right, get it checked out. It may be nothing, but it may be something and I would rather feel silly and be wrong than to no longer be here for my family.

My ideal run: For me an ideal run is great weather, great music and friends to run with. Honestly though, because of my heart history, every run is great simply because I can do it.

Why I love to run in Michigan: Every season here in Michigan has something fun for running. I love the fall leaves, the winter snow (not the ice though), the spring — watching the world come back to life. Summer is challenging for me with heat and humidity, but it is still fun.

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Heart Hero: Erica Dahlgren, married and mom to 2-year-old Jonathan. Lives and runs in Chicago.

‘Heart Hero Mommy’: I was honored and surprised that I was chosen as a Heart Hero. I am a Heart Hero Mommy. I myself have a perfect working heart. Unfortunately, my son, Joey, was not lucky enough to have one. Joey was born with multiple heart defects and had heterotaxy syndrome. Joey had his first open heart surgery at only one day old. He did great, but unfortunately he endured several complications that he was unable to overcome and passed away in February.

Baby Joey.I first found out about Joey’s defects at my 20-week appointment. Once Joey was born, it was my new job to become his advocate. I needed to speak for someone who could not speak for himself. Congenital Heart disease affects the young and old. Heart defects are the number one defect in infants. I am young, healthy, and in general take care of myself. I was shocked and surprised when I learned about Joey’s condition.

My Heart Hero goal: It is exhausting, stressful, and overwhelming taking care of a chronically ill child. I quickly learned that I need to care for myself, too. My goal as a heart hero is to remind moms that it is OK to take time for themselves. As moms we feel selfish doing these things, but in order to be good moms we need to be healthy. That means rest, good food and exercise. Running is a great way to do this!

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“Running brings so many things to my life. It brings passion, dedication, commitment, and sense of escape. It is great to get away and focusing on my thoughts, breathing, and body. It is addicting pushing yourself to the limit and experiencing the runner’s high. Training for a race keeps me focused. Having a goal and training plan keep me motivated to do something that is good for me!”

 

My ideal run: An ideal run for me is running with my husband! He pushes me to go further, faster, and it is always great to run with a buddy!

Michigan ties: I currently reside in Chicago, IL. I did live in the Ann Arbor, MI area for several years before moving here. I love the beauty of running in Michigan! There are lots of trails and it is great to be out in nature. My husband and I use to run together at Argo park all the time.

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Pam (far right) with her daughter and grandchildren.

Heart Hero: Pam Mace, mother and grandmother. Lives and runs on Grosse Ill, Mich. “Being a Heart Hero is an honor. It has given me the opportunity to encourage others by sharing my story. It’s a platform to raise awareness and to inspire women who are dealing with health issues. Life does go on, but sometimes with a new normal. If I have given one person hope or inspired them, then I have made a difference.”

My Heart Story: For me being diagnosed with fibromuscular dysplasia (FMD) put me on a path with many life changes, but the journey that I have experienced since my diagnosis has been amazing. I have a new normal which suits me just fine. The first year after dissecting (tearing) my carotid arteries and my left vertebral artery were the hardest for me — there was a lot fear, frustration and anxiety. Many people do not survive one dissection and I had three, all arteries that supply blood flow to my brain. Due to the tears in my arteries, I had a small stroke and formed two pseudo aneurysms. After more testing I was also diagnosed with renal (kidney) FMD and ended up having to have stents placed in both of my carotid arteries. I was 37 years old when I had my event.

FMD causes your arteries to form abnormally creating areas of narrowing or stenosis. Your symptoms will depend on the artery affected and the severity of the disease. There is no known cause or cure for FMD and 90% of our patients are women. Up until the last few years the disease has been considered rare but we have seen an increase in patients getting diagnosed, leading many in the medical community to believe it is under-diagnosed and may affect 5% of the population. FMD can affect any artery in the body and it has been linked to spontaneous coronary artery dissections. Fortunately for me, I did not dissect my coronary artery but I also ended up diagnosed with heart palpitations.

My palpitations started a few years back while I was running a 5K obstacle course. I was a mile into my run and could feel my heart racing faster and faster, I became short of breath, had to stop and almost passed out. I felt like I was watching a patient on a monitor, who was going out any second, it was crazy. At the time I couldn’t help but think, what’s next? I have already been through so much with my health. Those thoughts quickly passed and I focus on how lucky I am after everything that I have been through. I have an amazing doctor and I am surrounded by some of the best doctors in the world who are treating and researching my disease. I am on medications to treat my multiple issues, have regular follow ups to look at my arteries, kidneys, heart and am here to say that I am doing very well.

Being a nurse has helped with my journey in so many ways. After having my event in 2000, the first thing that I tried to do was research the cause of my dissections which was initially unknown until almost a year later when I received a diagnosis of FMD. At that time the disease wasn’t even listed on the national organization for rare diseases (NORD) web site. There was very little known about FMD and very few articles written on the disease; you could find autopsy reports. FMD was first diagnosed in 1938 yet no one took an interest in the disease, here I was getting diagnosed 62 years later. Think about how different my event and diagnosis might have been had the medical community taken an interest. But it was considered a rare disease.

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“Running brings a sense of calm to my life and it keeps me healthy and fit. It’s my time to shut down and clear my head. After every run I feel great physically and mentally no matter how easy or hard the run was.”

‘I had to be my own advocate’: I pushed my doctors to try to find answers. It became very clear at that time that there were no real answers. I found a support group for the disease where I was able to talk with other patients also diagnosed with FMD. In 2003 the Fibromuscular Dysplasia Society of America (FMDSA) was incorporated and soon after I became an official volunteer and served on the Board of Directors, our meetings for many years took place at a kitchen table with just a few of us.

Through sharing my story I was successful in getting FMD listed on the National Organization of Rare Diseases, getting the National Stroke Association to recognize FMD and then a year later the American Stroke/Heart Association; these three accomplishments lead to a very successful awareness campaign and an increase in patient diagnosis.

As they say, the rest is history. In 2009, I gave up clinical nursing in the emergency room to become the Executive Director of FMDSA. We continue to see an increase in diagnosis. We have an established FMD Patient Registry that is coordinated through the University of Michigan and funded solely by FMDSA and our members. We have 13 centers throughout the United States and over 1,250 patients have participated in the registry. To date we have published over 20 abstracts and manuscripts with data from the registry.

I never expected FMDSA to grow as big as it did or ever thought in a million years that so many patients would be getting diagnosed with FMD. Emergency room nursing was so much a part of who I was, that it was hard to walk away from but I have been given a second chance at life and what I am doing today is making a difference not only for this generation but it will for generations to come. Don’t give up on yourself or your hopes and dreams. Your new normal can still get you there and you may just end on an amazing journey, doing amazing things — I did.

You have to be your own advocate. You know your body better than anyone, listen to it. Heart disease and stroke can happen at any age, if you feel like something isn’t right contact your doctor. As a nurse I can you that we would rather work you up and find nothing wrong than have you sit at home ignoring symptoms and have you suffer an event such as a heart attack or stroke. For many years after my diagnosis I wasn’t able to run, I took my time and allowed my body to heal and eventually was able to get back into it. I can’t run the distance that I use to and still have to take time off when I am having health related issues but that’s my new normal and I am ok with that.

Running in Michigan: Grosse Ile along the Detroit River is my favorite place to run. During a sunny beautiful afternoon, just being able to watch all of the activity on the water is so relaxing to me while at the same time getting my run in.

I really enjoy being able to run during the different seasons in Michigan, each offering a different challenge, beauty and the opportunity to connect with nature. I have to say the winters are getting harder, but it’s so cool to be running and watching the deer roaming around — actually I see them just as much in the summer months but there is something about the beauty of the deer out in the snow.

The Detroit Women’s Half Marathon & 5K is set for Sunday, Sept. 20 on Belle Isle in Detroit. Learn more about the race, and the Heart Heroes participating, on the race web site here »

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